I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Chris J's Journey

User
Posted 13 May 2015 at 19:48



 This is the second time ive tried to post this today -- hopefully the site wont crash again.

Im chris 47 , psa 34 , 3 biopsies , 2 mri's , bone scan , CT scan . I've posted once before .

 

Had my CT Saturday and yesterday consultant guided TRUS . Very unpleasant and punctured my bladder
unfortunately but seem ok now . My CT results were already through and showed a
lump high up and to the rear of my prostate against the bladder . He thinks it
cancer and took 4 samples but said it just MIGHT be a lymphoma etc -- ive only
2 tiny cancers detected and my PSA just doesn't add up -- his own words .

 

UNFORTUNATELY the scan revealed two lumps on my adrenal glands which need investigating -- they
took blood and I need to do two 24 hour urine samples . They were very
interested as im on Testosterone and Thyroid replacement re hypopituitarism .
He said these tumours although probably non-cancerous could deffo have caused a
multitude of issues both mental and physical -- I was medically retired in 2013
after 24 years employment . He said prob need a laproscopomy to remove them
anyway.



We discussed prostectomy with or without bladder removal re the proximity . Another option
was High intensity Radiotherapy whereby I keep my organs . Impotence probable
anyway which im massively keen on avoiding being 47 yrs old .



Anyway there we are . El and I find out 27th after a massive journey of general ill-health . Here's
hoping . Thanks again for support and for the site in general which has given
me hope and insight .



My psyche has been in contact to help smooth things a little



Edited by member 23 May 2015 at 17:48  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 01 Mar 2017 at 14:56

Hello all
Saw Onco today. Didn't take a PSA sample. But it's all sorted. Yes I can have the PSMA PET scan at UCLH in approx 5 to 6 weeks time. 95% likely to be covered by NHS. I won't need to see a different Onco. Just turn up for the scan. He quite excited as I will be the first Southampton Prostate patient to have this scan. I was one of the first to have Choline PET last year.
So I'm pioneering scans and ED treatment et al !! I may be quite a negative person but I like to get things done right if I possibly can.
He feels the results of the scan will be fairly conclusive. He would still like me to have RT to my bladder neck but we will decide for sure at end of April when all the results are in.
Feeling positive , winter is over , days are lighter , I've even got myself a new job even though I am retired on a pension.
Good luck to all
Chris

If life gives you lemons , then make lemonade

User
Posted 04 Jan 2017 at 15:59

Just an update to keep my post factual. PSA test today 1.4 up from 0.91 five weeks ago. So still effectively a six week doubling time.
Now on 4 weekly testing.
Interestingly I asked Onco today if I could have a PSMA PET scan anywhere in the country and he said no and that trials are over. Tentatively booked for Choline PET scan in six weeks time.
Cheers all you amazing people and may 2017 be good to you all xx

If life gives you lemons , then make lemonade

User
Posted 21 Apr 2017 at 19:47

Can't even put into words the running around this week, but I shouldn't complain at our grand NHS.
After the heartache I got another call yesterday saying they could scan me today due to a cancellation. So off I went to London again and stayed the night , and today successfully underwent the PSMA PET scan. I consider myself very lucky even though I fought for it. Quite out of pocket , but considering I was willing to pay for the whole scan two months ago !!!
Anyway , maybe results Wednesday at Onco appt. Im actually not too stressed tbh. Worn out.
Thanks all for replies

If life gives you lemons , then make lemonade

User
Posted 30 Aug 2017 at 16:04

Hello everyone.
Been a while , enjoying life love and travelling. Oh and working too !
Saw new Onco today. I have been off HT for exactly one year now and chosen not to have RT.
PSA measured today was 7.6 up from 2.7 five months ago. My doubling velocity remains at approx 11 weeks. He is happy to keep me entirely off treatment and test 4 monthly. He will restart scanning if there is a velocity change and / or I experience body pains anywhere. He made it quite clear this is inevitable eventually. This plan fits with us both and my mental health issues and quality of life concerns.
Treatment plan ahead will be injectable HT , early Chemo , and Abiraterone has been offered.
The hugest battle I'm facing is mental stress and not knowing when I will deteriorate. I still want to pack my bags and run somewhere but I don't know where , and am tethered by my family life obviously.
Anyway thanks all for this site x

If life gives you lemons , then make lemonade

User
Posted 03 Oct 2017 at 00:53

Hi everyone it's Chris's wife Elaine here. I've been re-reading a lot of the comments you have all posted over these months -  I'm in the background hovering usually but wanted to come out of my shell and personally thank you all for the support you have shown and continue to give to Chris and I. I'm not really a forum-ite (for want of a better word!) but PC UK has been of huge value with information, support and friendship. Its been a difficult journey which you have all followed and I just wanted to say a big thank you for your company and your very kind and supportive posts to Chris - they do mean a lot.

User
Posted 04 Oct 2017 at 16:12

Thanks for the welcome! It's nice to know I am not the only background hover-er :) We have talked a lot lately Chris and I, and agreed that I hijack his thread and post a quick follow-up. I hope it doesn't sound like I am telling anyone how to suck eggs as it's definitely not the intent!

I know many members have publicly and privately messaged that his story and input has been of immense help to those that find themselves in this horrible position - who knows maybe this will help too. It's a perspective anyway. It has to be said we are a complex picture and the cancer diagnosis unhappily came in a very settled time. So now all these months down the road we find ourselves still here taking in seemingly forever new ground. One of the great strengths we have is our ability to talk and be honest - well these conversation just keep getting down to the bare knuckle and we are both a bit wrung out.... but what I would say to anyone struggling is keep on talking no matter how awful it may feel because it's the only way forward. Stating the obvious? Probably! But sometimes REALLY straight talking about hopes and needs and wants and desires and fears makes you learn bits about yourself and each other that you maybe never realised were there. And this very cruel cancer affects pretty much everything possible.

So at the moment on this journey we are playing the waiting game and still talking, figuring out and still trying to forge a way through all the crap that the cancer throws up. And thinking outside the box too to help Chris find his path and a bit of peace. Yep we all get mad, angry, frustrated, hurt but once you get through those moments there are key words - kindness, compassion, love, goodwill, generosity. Altruism. That's a hard one! (Isn't Piglet supposed to be the only true altruist?!) Communication can be hard (hands up!) but it's just so so vital xx

Edited by member 04 Oct 2017 at 16:18  | Reason: Not specified

User
Posted 02 Jun 2019 at 19:44
Thanks all for replies. Yes I’m a lot perplexed. I genuinely got back from cruise expecting the worse and HT and Chemo start over summer which I think I would have refused. Truth is I’ve not even been offered any other treatment than SRT which I’ve been told is highly unlikely to be successful. He won’t treat something he can’t see. He’s always said that. If it was in my pelvis it would be the size of a tangerine. I’m an utter classic case of oligo mets. All over my body probably but nothing solid yet. I know it’s coming but I don’t think I’ll ever have regrets now I’ve enjoyed totally normal life for 2 yrs. It’s my 52nd Birthday Friday and four years post op on the 15th. Yes the worry never goes away ever , but I’ve booked another cruise end August and just hope nothing crops up in the meantime. Stay well all x

If life gives you lemons , then make lemonade

User
Posted 13 May 2015 at 19:48



 This is the second time ive tried to post this today -- hopefully the site wont crash again.

Im chris 47 , psa 34 , 3 biopsies , 2 mri's , bone scan , CT scan . I've posted once before .

 

Had my CT Saturday and yesterday consultant guided TRUS . Very unpleasant and punctured my bladder
unfortunately but seem ok now . My CT results were already through and showed a
lump high up and to the rear of my prostate against the bladder . He thinks it
cancer and took 4 samples but said it just MIGHT be a lymphoma etc -- ive only
2 tiny cancers detected and my PSA just doesn't add up -- his own words .

 

UNFORTUNATELY the scan revealed two lumps on my adrenal glands which need investigating -- they
took blood and I need to do two 24 hour urine samples . They were very
interested as im on Testosterone and Thyroid replacement re hypopituitarism .
He said these tumours although probably non-cancerous could deffo have caused a
multitude of issues both mental and physical -- I was medically retired in 2013
after 24 years employment . He said prob need a laproscopomy to remove them
anyway.



We discussed prostectomy with or without bladder removal re the proximity . Another option
was High intensity Radiotherapy whereby I keep my organs . Impotence probable
anyway which im massively keen on avoiding being 47 yrs old .



Anyway there we are . El and I find out 27th after a massive journey of general ill-health . Here's
hoping . Thanks again for support and for the site in general which has given
me hope and insight .



My psyche has been in contact to help smooth things a little



Edited by member 23 May 2015 at 17:48  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 31 May 2015 at 17:54
Hi Chris, sorry I have not posted before but felt I had nothing to add until now.

We are similar/ not similar, I was diagnosed last October age 49, I have 3 kids, 10, 15 and 17, Gleson 9 PSA was 342 on dx now 5.

Before reading this, don't get me wrong, I have daily wobbles and tears, just had a bout due to C, prognosis statistically 4 years, never given any options ie HT plus chemo and RT only, toe and finger nails in a bad way, just had to self enema ready for RT this week ( why they make you practice twice before each session Lord knows), chemo ended but stopping taking steroids cold turkey may have has an effect on me mentally and to top it all have just got back from a "get away from it" holiday but had terrible tooth ache for the last 3 days so ruined that plus of course not an erection in sight this year but............

Stats are based on history and in the last 10 years where most stats come from, there has been massive advances in PC treatment so I genuinely believe any stat should " on average" move longer, those stats are not usually age divided, you like me are relatively young so I think that gives us a better chance so sod too much reliance on stats( accepting dark thought are going to happen).

As for sex, well I was a great fan of it and it's true to say that if you have a libido still ( as you clearly do) then you are going to miss it ( or think you will) however once the HT and other procedures kick in there is a good chance that ( statistically ha ha) you may not be so bothered. I am being selfish here ( ie not considering my wife's needs) but I have replaced sex with more running. There are still things you can do for your wife but more out of love for her rather than what's in it for me.

As has been said in earlier comments, sex v ( quality) life no contest for me or my wife , I am closer than ever to my family, feel good 90% of the time and plan things in rolling 3 month periods. I realise before I used to plan a holiday 12 months in advance and semi wish my life away to that time. Now I seize every day and have crammed more into the last 6 months than I would have before in 3 years.

The above may not make your choices any easier as I am not in your situation in that regard but what matters most is being around with general good quality of life as far as I see it , you may disagree of course.

A final thought, I am employed in the banking industry (boo hiss I hear the forum say) but one lesson we have learnt ( although I would say that I have never been involved in all the bad stuff) before we make any decision now is to think what today's action will look like under scrutiny in 5 or 10 years time, if we think we could hold our head up morally then we have made the right decision. So perhaps do that for your dilemma, in 5 or 10 years what would have mattered most in those proceeding years? In any case you may be able to have cake and eat it anyway.

Sorry for the long comment, hope I have not offended , take care

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 03 Sep 2015 at 22:15

Hey Chris,

I live about 26 miles and, according to Google maps, 38 minutes from the Churchill. Next time you are due to go there, and need a rom, let me know, I may be able to offer you a bed overnight, either before it your appointment if it is early morning, or for the evening if it is later in the day?

Not promising as I am away a lot, but it may work out okay?

Nice of Premier Inn to do the decent thing by you though.

atb

dave

 

Edited by member 03 Sep 2015 at 22:18  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Oct 2016 at 21:30

That's quite patronising Lyn.

If life gives you lemons , then make lemonade

User
Posted 08 May 2017 at 18:46

I have received fabulous advice from so many of you kind people on another thread in order to help me make a decision. I left a message with my specialist nurse on Sunday night and I was in a bit of a state emotionally. He called today and said he was kind of expecting to hear from me lol !!
I fed to him that El and I had already more or less decided again that I didn't want RT based on incomplete facts , and that my mental health had just plummeted in 4 days etc.
Explained I had loads of advice from PCUK and from research and that I would like a second opinion. He was FANTASTIC and reassuring as ever and fully agreed with me and says the team at Southampton understand I may need my treatment ' tailoring ' to give the best all round results. He has insisted I will get a new appt with a different Onco without having to pay, and fully reassured me it's not a ' closed-shop' between consultants there. I can't mention names but there is an AMAZING Onco here who is running the new headlined immunology unit at Southampton , and he specializes in prostate and bladder cancers. I've asked if I can see him either NHS or privately. I've had superb service in this area so I feel more at ease. I've been told it's fine not to restart HT until some decisions have been made.
Thanks so much to all of you on this precious forum.

If life gives you lemons , then make lemonade

User
Posted 03 Sep 2017 at 22:49
Oh Chris that wanted to pack your bags and run comment certainly struck a chord with me , in fact forget the bags I have wanted to run and run so many times . In reality I don't run anywhere but in my head I run and run everyday as far away as I can get from the reality of our situation.

All of that running and not getting anywhere is exhausting trust me I have been to John Ogroats and back 🙃

The run trigger in our heads is a primeavel trigger to get away from a scary situation that in olden times would have got us as far away from a triceratops as quickly as possible but sugar when that Triceratops is trapped in your head then running away from your self is impossible .

Not sure if this would be an apt description for you but I suspect it is and it is 100% description for me. This is all a bit deep but just wanted to give my anology on living with pca.

Hence my Never Laugh at A live Dragon that is pretty much what it means .

If only we could have the mindset of dogs because they truly live in the moment , they don't think of the past nor the future only the here and know what is happening at this moment and if this moment is good then enjoy it to go the max.

Xx

BFN

Julie Xx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Mar 2018 at 15:53

Celebrating rightly or wrongly ! !
Scores on the doors ..... Psa 24 , all other blood tests clear , full body CT clear , full body bone scan clear ( except wrecked knees lol ) , and I’m generally very healthy and leading a normal life since surgery nearly 3yrs ago.
Onco decided on no action based on no clear evidence of advanced PCa. Review bloods and psa in June. No scans till Sept ( I’ve had a lot ).
Action will probably be based on symptoms and / or psa velocity change. I’m utterly comfortable with all this and committed to living life to the full whilst I can. Booked our summer holiday already for the whole family. Yes it’s a worry for a week come test time , but it’s now forgotten already. Huge rib-eye steak in the fridge for tonight and a bottle of Rioja. Thanks again to everyone for support

If life gives you lemons , then make lemonade

User
Posted 23 Mar 2018 at 21:52

Haha I’ve just done an hour’s Lego !! Not sure but asked plenty of questions Lyn. It boils down to different people in different areas of the country with different Onco’s with differing views !! He may even be bound with what he can offer without substantial evidence. In my position he said the next treatment would still be SRT which I have no interest in at all as you know.
We all know one can have a low psa but a nasty cancer , or a high psa with a mild one , yet the rate of change is very pertinent in either direction. I’m not sure what to say , and it seems I say too much sometimes , but I’m personally more than happy to be left as I am enjoying life and I have the confidence in this man and his credentials that I know he would be pushing treatment if it was needed. Massive amounts of over-treatment as we know because of NICE guidelines. All supposition , but I may have gone through 36 days RT last year only to be in exactly the same position as I am now , yet with more side-ecfects. I questioned micro-mets but they reckon 2 PETS would have seen them ! We both happy and I don’t want unnecessary treatment , so it’s win at the moment. I know it could all go wrong but I’d rather have it this way. Everyone enjoy their weekend !

If life gives you lemons , then make lemonade

User
Posted 24 Jun 2018 at 20:13
Scary time again. Full suite of bloods done last Friday. I get psa result tomorrow which is expected circa 50. All the rest — liver , kidney , bone , CRP, Magnesium, FBC , testosterone etc I get Friday at Onco appt. Really hoping to delay any treatment till September when I get a full suite of scans again and psa expected 100. Enjoy summer hols and full bodily functions to the full. Not keen full-stop on becoming a Monk with HT and/or Chemo at the age of 51. Still utterly pro-life as it is at the moment. Gave up HCA job as was so demanding mentally and physically, but taken up kitchen assistant at local Outward Bound centre to keep my mind off things. Will post psa tomorrow and Onco visit at weekend. Quite a long journey now at 3 1/2 yrs yet much less than others. Yet mine is a bit of an enigma — not going to treat something that every scan available can’t see. Taking my chances. Good luck all my fellow strugglers x

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2019 at 11:15
Thanks all for kind wishes and words in advance ! I guess I’m becoming a bit of an old-timer on here !

Saw consultant today. Psa 82 , he didn’t mention other bloods so prob ok. Ordered a full CT and full bone scan and see him next month exactly. Mainly due to no scans for 9 months but obvious advancement somewhere. I asked about a PET but he would only agree to that if I accepted RT to my whole pelvis. I guess that is a cost thing and a NICE guidelines thing ! Essentially my next step would be the RT which I’m adamant I’m not having without evidence. I am aware I have margins down there but they agree prob not producing that much psa. Anyway he said he hoped and even expected the scans may be clear , and in that case he would give me six months again to live my life and fortunate QOL for which I’m eternally grateful.

I guess in my case we are just going to wait till it metastesises somewhere as a tumour and then deal with it then and discuss whether I have HT etc. He said why enter into any conversations until we actually get there. He’s correct of course but still very scary , especially for someone like me whose mind never switches off. I’m just praying clear and then 6 months freedom. Thanks for all your support xx

If life gives you lemons , then make lemonade

User
Posted 04 Feb 2019 at 07:08

Hope you get the result you want Wednesday Chris, i dont post on your thread often but am always rooting for you.

my sports massage guy who is also a mindfulness coach shared this poem with me and it has helped me enourmously at times (and i never read poetry usually). i would go as far to say that most people on this forum could benefit from these words at some stage or other. dont read it about not caring for others plights but more about enjoying today without worrying about tomorrow (apologies if you disagree):-

Beyond the bend in the road
There may be a well, and there may be a castle,
And there may be just more road.
I don’t know and don’t ask.
As long as I’m on the road that’s before the bend
I look only at the road before the bend,
Because the road before the bend is all I can see.
It would do me no good to look anywhere else
Or at what I can’t see.
Let’s pay attention only to where we are.
There’s only enough beauty in being here and not somewhere else.
If there are people beyond the bend in the road,
Let them worry about what’s beyond the bend in the road.
That, for them, is the road.
If we’re to arrive there, when we arrive there we’ll know.
For now we know only that we’re not there.
Here there’s just the road before the bend, and before the bend
There’s the road without any bend.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 14 Jun 2015 at 17:39

Oh no not him again I hear you say . The aftermath of me cancelling the surgery at the pre-op assessment had repercussions obviously. The phone never stopped ringing , so I turned it off and buried my head in the sand.

Friday was a new day and I felt ashamed. Elaine was giving me " that look" that you ladies learn aged 4 . My mum and dad were angry , and a few friends that know me were quite shocked also . So I felt bad. I texted the nurse specialist to say sorry and also my surgery and also my mental health psychiatrist who had all tried to contact me worried.

Since I retired , I read with young children at my little boys school twice a week. On Friday morning my sons teacher grabbed me and wished me luck. And when I read with the children Friday afternoon they gave me a HUGE card with each child's picture and good luck message. I felt such a fraud. Elaine and I went to our village at 4pm and the surgeon rang . He was lovely and not mad like I thought . He asked how we both were . He said there had been another MDT meeting that day , and they insisted the operation was the only way. He promised he would do everything in his power to heal me but also keep my functions ok . He basically said the slot on Monday was still available , and Elaine said yes before I could - and gave me "that look".

And just now on Sunday afternoon he has called to see if im ok and still on track ( nice in his own time tbh ). Minor concern as I missed the blood test on Thurs re my dodgy adrenal function , but he said I should be ok ( my adrenal lumps still need looking at ).

So YES tomorrow is the big day -- Hand Laproscopic radical prostatectomy , with bladder work and Lymph removal . I suppose in the end I didn't have the choice , but did the "right thing". Either that or be shamed or die . So i'll be in contact  Tuesday hopefully if all goes well.

We cant thank everyone enough for your input and kindness. And reading posts from the past .

On a lighter note its been amazing having sex virtually every day for 4 weeks ! I'm just dreading Elaine finding out ;-)

Chris

If life gives you lemons , then make lemonade

User
Posted 21 Jun 2015 at 21:51

Hi Chris

I have just been reading your journey, thank you for sharing it. I needed to read that the way I have and am feeling about it all.

I am only 43 and was diagnosed with PC on the 16th June 2015. LIke you I am totally terrified and everything you have been through, I am going through right now.

Your story and you have been a complete inspiration to me, Thank You Chris.

Good luck in your recovery and may you soon be 100% fit and well with everything to look forward to and enjoy again.

User
Posted 12 Aug 2015 at 23:06
Chris and El,

I am so sorry that the results have come back this way, you have been so supportive to Stuart and I over the past couple of months and to so many others on here too. I am just so upset for you and want you know that I am here for you.

Much love from us both,

Trish and Stuart

User
Posted 13 Aug 2015 at 12:20

Hi Chris,

Not the news we were all hoping for. Sorry to read about this latest twist. But, I admire the way you are dealing with it.

If you look back to your earlier posts I think you will see how much better you have coped with everything as it has developed when you were so doubtful about your ability to handle your situation to begin with.

I wish you and El well.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 13 Aug 2015 at 14:22
Hey Chris

You know how I feel about your results my friend from our daily texts away from this forum.

You have all our support and you have to soldier on, you've been my inspiration from my diagnosis and now you are my friend.

You be strong but most of all enjoy your holiday tomorrow.

Steve

User
Posted 13 Aug 2015 at 16:07

Chris

Time and data usage, particularly on long threads, forces me to leave out most of the surgery posts. However experience tells me when replies come in pretty quickly it's either good results or not so good news. Upshot is I read the histology post. From your other upbeat posts I had a mental picture of you doing and coping well. So of course that post shocked me.

I always try to look for the positive. The one that comes first to mind is there're G9 T4 guys who take the view having the bulk of the tumour removed gives a far better outcome but are refused surgery. Although of course you would rather not be in this position you have achieved that.

From your other upbeat posts I've no doubts you will both pick yourselves up and fight on.

Keep strong and positive

Ray

User
Posted 17 Sep 2015 at 20:40
Chris

sorry I have also been off the air a bit .. well in the air actually but that is another story.

A second opinion is always an option, it does not always change the advice given but it may just offer an alternative approach.

When PSA is being generated something is doing it,that could be in the area immediately around the prostate bed or it could be something that has moved out but not yet formed into anything visible on a scan and not even viable at this stage as a true progression. These are sometimes referred to as micro mets. That may not be as bad as it sounds as any of these still have to find a way to actually survive and then invade another area like the lymph nodes or bones or any soft tissue and that can take a while. Salvage treatment such as adjuvant RT or HT aims to kick their little asses before they get clever. I have also recently heard of some Men in USA having adjuvant chemo post RP but I am not sure if that is considered here in UK.

The literal translation of adjuvant is "to aid" and I believe that this treatment is usually given fairly soon after the thing it is meant to be aiding.

I am hoping one of the much more knowledgeabe and technical experts can assist here.

I think having a clear explanation of what can be done, what to expect and just how this might affect you physically will be something you need to get done quickly whilst you are so on top of things mentally. I am sure your GP and BP specialists will give you any help you need to get things moving.

I wish you all the very best

xx

Mo

User
Posted 11 Nov 2015 at 21:11

Excellent news - I think the delay until April will make RT more bearable for you rather than have to deal with it while the days and your mood are dark.

My guess is that chemo would have been a step too far anyway and I feel that your onco has probably taken a lot of advice from your psychiatrist about how much you can or should cope with at any one time.

Concentrate on that little boy having the best Christmas possible x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Nov 2015 at 21:59

Hi Chris,

What ever you are going through today, and it is more than some of us, I hope that you will be able to take a minute, look back and see just how much better you are coping with everything now. I don't say much on your posts because I can't help you. But, you are amazing young man. I hope you all have a great Christmas.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 12 Nov 2015 at 10:52

Hi Chris,

I agree with Lyn waiting until spring seems the better option this way you will be able to enjoy Xmas with your family before starting the RT. Yes the Bicalutamide does sap your energy and for some (Trevor included) just generally makes you feel low. Keep one thought in mind though it is also making the cancer feel low.

I am often asked how we cope there is no magic answer just one foot in front of the other and we keep going because even if today is a bad day then TOMORROW my friend TOMORROW just maybe will be a better day.

May all your Tomorrow's be brighter.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 Jan 2016 at 00:30

Hi Chris,

One of my favourite comedians was Les Dawson, I particularlly liked this one of his:

'I haven't spoken to my mother-in-law for 6 months, I haven't been able to get a word in edgeways!

I fell for that trap this afternoon, went around to see the in-laws, sat down on the sofa, listened attentitively to my mother-in-law, then woke up to find that I had managed over an hours kip.

So now it's half past midnight and I am as sleepy as a box of frogs.

I don't know if your in-laws are still around, but there is one possible solution to insomnia?

:)

Dave 

User
Posted 14 Apr 2016 at 10:36

Hi guys
Just an update to my journey. No need to reply !
Oncology appt yesterday. I've been on Bical 150mg HT for 6 months now in total. Still daily tummy ache and nausea , and adhesion pain no signs of shifting. It's annoying as he said adhesions are very rare. And he discounted the HT causing tummy probs , yet Patient.UK which our GP's use clearly has it as a ' very common ' side effect. My psa is 0.14 so a minute rise.
We have decided to stop HT end of August ( we have an amazing family holiday planned and don't want to change things before then ) and then do monthly psa tests until, I reach approx 5. I then have a clear offer of another C11 CholinePET scan at Oxford ( hurrah another night of food and drink at a Premier Inn ). At least this way we are doing something , and being an engineer I will feel happier knowing what's happening inside me . My mindset needs to change radically , as at the present I'm fatigued , over-emotional , depressed , bl***dy impotent which is eating away at me , and highly anxious / irritable. Not a good way to be ! Elaine will be moving me out to our new shed soon :-((.
Best wishes as ever to everyone x
Chris

If life gives you lemons , then make lemonade

User
Posted 22 Apr 2017 at 11:42
Great news Chris, hope all goes well with the results.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 25 Apr 2017 at 19:40
After all the sh1t you've been through, buy yourself a bottle of Duke red from Morrisons, £8, and tell me what your verdict is. If I could do this wine intravenously I would

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 05 Oct 2017 at 21:07
Hi Chris and Elaine

The thing for me is that I always try to say it as it is but not to be too miserable about it. We have been so incredibly lucky, despite spread to bones and lymph and Gleason 10, nearly seven long years ago. I remember praying to a God I don’t believe in and asking for four years and, well we have had seven so far. Life is up and down but I still have my lovely man with me, I cannot complain.

But I want to!

It’s lovely that you can talk to each other.

Lots of love

Devonmaid

User
Posted 10 Oct 2017 at 20:14
Stay strong, Chris. Your latest words ring true for all of us trying to come to terms with this awful illness. Cliches are easily said but your strength and personalty still inspire.
User
Posted 08 Dec 2017 at 14:51

For those still following my journey ............
I LOVE my new Onco --- the Prof at Southampton. He must know his stuff as he's heading up the latest immunology research.

Today was a very worrying appointment knowing that my post-op , post HT PSA has risen to 12 from 7.6 exactly 3 months ago . I felt sure I was on to the dreaded castrate level injectable HT with thrown-in Chemo on top . But guess what ? All my other bloods were within levels , and I reported a healthy me with no noticeable new pains anywhere . He again said he will not chase a PSA result alone with treatment -- not after scans that prove no spread anywhere . Bless him he has given me another 4 months respite but with a full CT and Bone scan prior to that appointment to be on the safe side. Or if I get any pains we will react into it immediately. I feel so chuffed that Elaine and I have put so much effort into researching this disease and that I have not been put through needless treatment ( in my instance ) like RT and injectable HT just on a whim when I am enjoying a good standard of life post-op , and working to help others , and as I posted a few days ago I am now enjoying full normal sex with the help of just a daily Cialis.
Naturally he did yet again state that I still have PCa which is multiplying and which WILL need treatment at some point , but for now we are facing it head on and have 4 months of freedom hopefully !
Tonight we are putting all the decorations up , and since my liver seems to be functioning 100% ( the greatest shock ) , I'm going to have a few. Sorry to be upbeat , but you're all on the coaster from hell and it has its highs and lows !
Sending sincere wishes and love from us both to all that have had recent sad news :-((
Chris and Elaine xx

If life gives you lemons , then make lemonade

User
Posted 08 Dec 2017 at 16:46

Brilliant news, so pleased for you both. Celebrate the moments, love and thanks to you both, your support has helped me through bleak moments when I could not share my thoughts with David as he was so low. We are going to hang our decorations tomorrow, and we will also raise a glass to those living with or have a loved one with this horrible disease. Well done both, enjoy.

User
Posted 08 Dec 2017 at 17:35

Are you mad ? "Sorry to be upbeat" ? WHY? you daft man.

Good for you. Shout it from the housetops, enjoy your drink and revel in the next four months

Christmas will be fantastic for you I know !!

We can't control the winds - but we can adjust our sails
User
Posted 28 Jun 2018 at 05:04

Hi Chris , just read your post so sorry to hear it  I hope you travel the right course  I only found out less than 4 weeks ago Gleeson 7  3 plus 4  thank god its within the prostate..  I am looking at doing proton beam therapy have you looked into that ?

User
Posted 29 May 2019 at 10:23
This website is still so appalling it’s taken me 10 minutes to search for my own thread haha. And I can’t update my profile despite 6 attempts.

And i involved myself in a 2 hr phone call researching people with T4 disease, and was given a £30 gift voucher , only to find that someone had already spent it in Leeds ( LYN :-)) ) and I’ve not been offered another one. Bless PCUK

Scores on doors. Rescans taken just before cruise are now showing completely clear / normal. I’ve not had my psa checked in a year as it’s just going up. He says my cancer is still simply too small to see. He offered RT again and then I’d get a PET scan thrown in. I frowned , he smiled. I’d already made my mind up I wasn’t going to accept HT if offered as I’m feeling utterly chipper.

So I’ve still got this G9T4 N1 monster inside me and it will catch up with me but I’ve been given another six months freedom before repeat CT and bone scans which suits me down to the ground. I was Utterly expecting the worst today only to walk away grinning like a Cheshire Cat. Celebrating tonight with a glass of wine or seven

Wishes to everyone fighting this , man and woman

If life gives you lemons , then make lemonade

User
Posted 31 Aug 2019 at 09:27
I am NOT still admiring the approach, or at least I won't be come November / December. I think you should have another scan (maybe a different one - worth contacting the FACBC trial people?) and then start HT regardless - it is clear from your social media that little P is the light of your life so at what point does sex become less important than his need to have his dad around as he grows up (or at least grows up a bit more)?

You are a clever man and you know first hand that later stage PCa can be horrific. There wouldn't be much sex with lymphodema, organ failure, jaundice, bone pain, etc. Have à wonderful cruise and then it will be Christmas - perhaps then a new year / new approach?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Oct 2019 at 17:24

Wishing you all the best for the next set of scans Chris. I think you’re right to expect something to show up sooner or later with your PSA level as it is. You have made your treatment choices with QOL in mind, I wonder sometimes whether I have gone at treatment too enthusiastically but that was my choice.

I follow your journey and am with you all the way.

 

Ido4

User
Posted 15 May 2015 at 00:02

I would just like to echo what Mo has said, and say that you are in the right place for support.

We will be able to help you more once you have your diagnosis in full.

You are going through a really difficult time waiting and sadly there is no easy way of getting through it, we have all been there and it is ongoing with the routine blood tests etc so we do understand.

I wish you the best of luck with the results.

Stay as positive as you can. Easier said than done though I know.

Alison

User
Posted 18 May 2015 at 19:10
Hi Chris,

Sorry to hear your news, we are new to it all too my Husband is 46 psa 3.5 Gleason 6 8mm tumour on one side. He has decided to have Da Vinci op which us now set for 9th July. We were walking around in a daze for a while but now after doing some research my husband now feels more ready for the next step. All I can say is to read everything you can and make your decision on either surgery or Brachytherapy, my husband chose surgery because he has poor urine flow so would have had to have a TURP first and then 6 months later Brachytherapy so didn't want to prolong things. You wiĺl get a lot if support on this forum for everything.

Good luck to you and your family,

Trish

User
Posted 18 May 2015 at 21:15

Thank you both xx Will start those exercises with my cheese and bics !

If life gives you lemons , then make lemonade

User
Posted 23 May 2015 at 18:28

Hello Chris and Elaine.
Just to say thinking of you really and hoping you can get some relaxing done over this Bank Holiday weekend.

Tough decisions to make, especially when you are so young.

Make your list of questions then place them in order of importance to you, rather than a random list. That way you get the ones really relevant to you answered first.
If you don't do it in order of importance you may get distracted by answers to a lesser question and get sidetracked.

Let the consultant see you have a list, he won't be phased by it, it's perfectly normal. You have a massive decision to make and he'll understand that you need the reassurance of your list.

My husband was more fortunate than you and was able to opt for low dose seed Brachytherapy and that is the only form I know about.
If your oncologist assures you that he can preserve your sexual function and it is important to you then you have to take it into consideration.
For what it's worth, and I do appreciate that it was a different Brachy, my soon to be 75 year old had this in June last year and is coming up to his first anniversary.

He didn't have youth on his side as far as sexual function was concerned but even he, at 75, can still get stirrings that are usable. With Sildenafil it makes it more than possible.

Whatever you decide both you and Elaine are in it together. She loves you enough to want to kill you if you don't take the treatment. Now that's love !!
You will need to stand strong with each other over the next few years.
There will be times for both of you when it becomes very difficult but remember that between you there is "a little man" who needs you both.

We are here for both of you. It's what we are good at.

Any questions, no matter how personal, there will be somebody who has experienced what you are asking. If you feel you want a more personal answer then click on the name under an avatar and you should be able to message that person directly.

Good Luck, and best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 24 May 2015 at 20:41
Hello, I just thought I would say I feel for you. I don't think the worrying gets any less. Even after treatment. My other half was 57 at diagnosis, psa 3.7 (up to 4.9 by treatment time) Gleason of 6 so we were lucky it was caught early. He was never really recommended surgery, but having read all about it I think he would not have had it unless it was essential, mostly due to ED fear, incontinence fear and also as he is a farmer he can't take time off

I can understand why men "want rid" and go down that route, also as my other half chose brachytherapy there are fewer treatments available should it return. If it returns after surgery you do have radiotherapy to fall back on.

We thought brachytherapy was the easier option, but he had it beginning of Jan and has had no end of problems, radiation induced cystitis and prostatitis. I won't go into details but whatever you choose you can have problems, or complete opposite and breeze through it all. With the brachytherapy we had to keep the children off his lap too as our youngest is only 6. But it wasn't a problem in the end.

We do have a friend that had his prostate removed in his early 40's due to being young he had virtually no side effects, You do have age on your side too

I wish you all the best in choosing your treatment, it is a tough decision.

User
Posted 28 May 2015 at 17:10

Hi its Chris
Thankyou for your support as always . I got drunk last night so haven't responded politely as I should have done . Maureen it will be interesting to track your journey as it was what I was offered then taken away from me . But I couldn't make my mind up anyway haha .
And Trish its nice to meet you . So your husband and I will be on the same journey but me first Grrr . It will be great to exchange notes and advice etc . All the best luck .x
Thankyou Countryboy as you have given me some hope and good advice these last few weeks and it will be taken on board . Its going to be Lapro by hand . Ive not nagged for robotic or anything but he has great pedigree -- I have a consultant friend who had a major sniff around.
Thankyou Sandra for ongoing support. It all helps . Im trying to be brave ( I am brave and used to pain ) . And im not going to post on here whinging. Im not great inside -- in fact im distraught massively. And I cant read the future . And im going to hate incontinence ( might be worse due to bladder reconstruction - the cancer is on the bladder but not in it ), and im TERRIFIED about erectile dysfunction as it has always been so important to me ( maybe unhealthily so ) . But we are who we are .
Obviously I wont be posting now other than to maybe help others on their posts . I want to try and share my journey with others ., as ive taken comfort and support from reading theirs .

So here we go -- awesome 48th on june 7th hopefully , then in someone elses hands on 15th June . We'll see how it goes !!

Chris

If life gives you lemons , then make lemonade

User
Posted 31 May 2015 at 20:42

Hi again Chris,

have thought about my earlier post and wanted to clarify my view, my "irrational" may be your "normal", "usual" whatever? I have not walked a mile in your shoes, from what you say, my issues, largely dealt with, lucky me, are nothing compared to what you are dealing with, PCa Bi-Polar etc.

I tend to give it straight, no fannying, tough love, maybe, and maybe I got you wrong earlier?

Stay here, draw strength from here, 'here" is always here for you.

atb

dave

Edited by member 31 May 2015 at 21:23  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 31 May 2015 at 22:58
Chris,

You know my story. I had the op 9 weeks ago. What I failed to mention was how scared I felt. Your thoughts and fears I would imagine are not unusual. I had convinced myself that although there is a 250,000 to 1 chance of dying under anaesthetic I would be the one. I was certain I would be incontinent for the rest of my life. In reality I am virtually back to full control. I didn't want anymore kids at 59 but as previously stated I would have frozen my sperm if I did. I have not had a sniff downstairs in the erection department but I am sure I will get stirrings back. If I don't I will be alive to support my family and offer them my ,often unwanted, advice.

You are going to feel anxious. I am a relatively calm pragmatist but as I said earlier I got things out of perspective. Your mental health condition cannot be blamed for the fear of the unknown that lies ahead. Sometimes you just have to put your trust in others. When I get a little anxious about flying I always say to myself 'the captain wants to get there in one piece too.'

Take care,

Paul

Edited by member 01 Jun 2015 at 09:52  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 01 Jun 2015 at 13:28

When you wake from that anaesthetic Chris your new life begins.
No it won't be the same, but there isn't anything yet to say it will be a lot worse.

Terrified - of course you are. You are stepping into the unknown so it is to be expected.

If an expert told you that you needed to strap on a parachute and jump off a cliff in order to save your life, would you be anxious to take that step towards the edge.
You'd be a strange one if you weren't. You'd firstly worry that the parachute wouldn't open but it will and although the journey to the ground may well be a bit of a bumpy ride they'll be people at the bottom to make sure you have a safe landing, with your loved ones waiting to greet you and say "well done"

As for posting or not when you are down, that is up to you. There are many on here who have benefited from the propping up that we are very good at so don't feel you have to be an outcast.
We'll offer the support for as long as it's needed, until you can stand alone and say "Bloody hell - I did it".

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Jun 2015 at 18:36

"I will try to remember not to post when I am down". Gosh, that's exactly when lots of us DO post. Don't worry about it - there is usually someone around to give you a reply whether you want it or not!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jun 2015 at 19:33

Chris

Post what you feel when you want to. Nobody will ever criticise you for posting according to your mood.

Paul

PS If you're on Twitter, you may be interested in following ex England and Lancashire opening batsman, Graeme Fowler, who has suffered significant MH problems since retiring and is very open about what he faces. Not bipolar, but confronts his issues openly. I'm sure in doing so, he helps others.

Stay Calm And Carry On.
User
Posted 05 Jun 2015 at 10:28

Originally Posted by: Online Community Member

How can someone make a decision that is life-changing? 

 

I preferred to look at it as life saving.  

 

If you change your way of looking at it, it is definitely life saving, only potentially life changing.  

It was a no brainer for me, even with the potential consequences which include not waking up after the operation, ED, double incontinence. 

A choice many of us have had to make.  There is still no clear best treatment option as far as I am aware for anyone in your position.  Only potential side effects and possible might get it, not get it all.  

As for considering those who regret what they did, which one hopes was the best considered option on the facts available to them at that time, bear in mind that this is your Cancer, for you to deal with now.  No one knows if their outcomes would have been different if their choice had been different.  

Bear in mind that a life without sex post RP is not guaranteed.  If it turns out that way, life is still a life.  With a chance to enjoy every day and company of family and friends.

If you choose to exercise your right to do nothing because of what "may happen", that is your choice and should be respected by family,  friends and medical professionals.

atb

dave 

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 05 Jun 2015 at 11:03

Great post from CB - the fact is that the majority of men do not have any long term side effects from surgery except the crucial one ... they are alive.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2015 at 16:43

Sorry to read that you could not cope with it all. If you are not happy proceeding with it, or can not cope with the thought of it, you won't go ahead. Would not think that anyone is angry, your illness may mean that at times you may be unable to control how you feel about it all. Maybe your mind is finally made up? Whatever you decide you have to be content about it, and live with it, no one else.

Hope you can put it to one side for the weekend at least.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Jun 2015 at 19:29

Chris, i think that you have simply found your own voice - you were never really sounding convinced that RP was the right option and I am really pleased for you that someone stopped and thought about mental capacity and your right to make your own decisions. Why would you apologise? Don't apologise.

Whatever those closest to you think or feel, they have no way of knowing what they would do in your shoes. Plenty of men in your situation (but without the MH issue) choose not to have surgery and opt for one of the other routes. Big deal - I didn't want John to have the op and did everything in my power to dissuade him but he was determined and that is how it should be - if he had listened to me and made a different choice because I was hassling him, I hope that someone else would have advocated and stopped me in my tracks.

Breathe, be calm, tomorrow is another day

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2015 at 20:03
Chris

I am so very sorry this happened today. In fairness the problems you are trying to deal with now are not only about PCa you are now also fully into the way your BP is making you feel and behave about surgery. Several men have got to the day of surgery and struggled to go through with it. They did because they had made that decision for better or for worse. You have not yet made a committed decision which is why the medical staff backed off. They cannot force consent or be seen to look like they have.

Right now I am not sure if many people here can help you much with that. We can share experiences about treatments, drugs, trials and all sorts of things but dealing with how you feel in your own mind right now we cannot.

Try and put today to one side for now take time out to just settle down so that you can regain your focus and start to think what options you may be able to deal with better than the RP.

I can offer you words of comfort and encouragement and listen to what you have to say and I will continue to do so. As will others There is no anger about this at all just sadness and sorrow .

I hope El and your family are coping with all of this in whatever way they can.

Thinking of you

Xx

Mo

User
Posted 11 Jun 2015 at 21:28

Hi Chris,

This is the last place people will judge you. As was stated previously it was preferable to have second thoughts about the op at this stage rather than when you were gowned up ready for theatre. 

I know that sometimes I felt overloaded with advice and was doubting my decision up to the day of the op. I would not worry about today. I was a nurse in another life and I know that the staff today will only have wanted the best for you and will have been faced with people with the same doubts and fears you had.

Take some time out. Have your good lady as a sounding board. You can re-assess your options. You can ultimately choose to do nothing that is your right. 

Wishing you well 

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 11 Jun 2015 at 23:46

Chris

Knowing my brother as I do, I am not the least bit surprised this happened. You are absolutely right to step away and reconsider your options.

Hope you are able soon to make and carry on with the preferred treatment, having considered all the implications and possible outcomes of each.

Paul

Stay Calm And Carry On.
User
Posted 14 Jun 2015 at 18:38

Well good luck for Tomorrow Chris.

You have everyone behind you, including those lovely kids who made the card. I'm sure when they all got together to make it they were all making a wish that you will get better soon.

For the surgeon to ring you on a Sunday, in his own time , proves that lot of folk have faith in you and so you should have faith in you too.

There was no shame in your behaviour last week, it was a natural result of your fear and your bi-polar.

I do hope that the surgeon has reassured you. I am SURE that he will do his very best for you. For him to contact you to give you that reassurance is brilliant. IF he is unable to do what he hopes then it will because he couldn't but he knows you best and he knows what he is up against and has still made that assurance.

I'll be thinking of you and willing you on. Good luck and bless you.
You are going to be fine !!!!!!
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 14 Jun 2015 at 19:06
Hi Chris

I've nothing more to say than all the best for tomorrow from me and Steve, we raised our glasses to you last night so if your ears were burning about 10pm you know why! 😉

Big hugs to you and Elaine, "chat" to you soon 👍

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 14 Jun 2015 at 19:41

Hi Chris,

I'm really pleased you're going ahead with it. 

I'm sure everything will be fine.  You won't be alone because we'll all be with you, in spirit.  You've got loads of people here who really care about you.

Good Luck for tomorrow.

Let us know, when you get chance, how you get on.

Steve

User
Posted 14 Jun 2015 at 20:49
Chris you have made what was a dull day for me bright, I am so happy that things have got back on track I broke out a bottle of wine to raise a glass to you. Cheers

Your post is full of spirit, I know the El look really well could bend a spoon from 50 paces away...I practice it a lot!

Everyone is totally with you on this.

I will be thinking of you and wishing you the best possible outcome tomorrow, your surgeon sounds fabulous and so caring.

Just remember tomorrow to stay totally focused no looking back and no regrets.

We will all be here to talk with you through recovery post op.

thankyou

xxx

Mo

User
Posted 14 Jun 2015 at 21:22
Chris,

Really wish you all the best for tomorrow. You know you have support on here. Looking forward to your update.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 14 Jun 2015 at 21:38
Well done Chris

This is hard, it has been hard, no one pretends otherwise but you can do it, you have loads of support. See you on the other side of the op.

Lots of love

Allison

User
Posted 15 Jun 2015 at 05:12

morning chris

just offering another hand for you to hold

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 15 Jun 2015 at 06:42

Thanks to all. Here we go now. Speak soon x
Chris

If life gives you lemons , then make lemonade

User
Posted 16 Jun 2015 at 20:24
Great to hear from you Chris, job done!

I hope you're as comfortable as you can be, all the best to you and El.

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 16 Jun 2015 at 21:08

Hi Chris,

Totally understandable that you would fret at this stage, worry that it may have been a false alarm, and the surgery was unnecessary, and without having all the information. Beginning to understand you and your thought processes now, but, but, but wait until the pathology results are through and then, and only then, will you know what you were carrying.

As for regrets, well it can not be put back, so maybe you can get used to the idea and concept of your new prolonged life? Lots of things may be different, but believe me regular great sex after RRP is possible. Maybe you were only at it every day before the op? I have had to deal with a far less regular sexual active life than I was having pre-op. But I am making do, grinning and bearing it, putting up with my frugal sex life with barely a moan or a whinge,and just having to accept that I can only do it four times a day. Life is tough, but at least it is a life without cancer.

atb

dave

did I say "great"? It's not great it's ydoolb marvellous. ;-)

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 17 Jun 2015 at 13:31
Chris

Hi there, I am home from internet exile and so happy to see that you are posting using your smartphone (hope it is an android and not one of those I Sheep things!!)

I agree with Dave, maybe a couple of us are starting to understand your thought process a bit better, only natural that you would start to worry that you had gone through all of this unnecessarily. I very much doubt that. Your PSA tests, biopsies and scans are most unlikely to have all got that much wrong.

I am no expert but I would think that there are many cases when the removed prostate looks ordinary it is what is happening inside that the human eye cannot see that truly matters. The more ordinary it looks maybe the more hope that everything has been well and truly contained giving you the best chance of a full recovery. Hopefully back to the continent and sex loving Man you were right up to the operation.

The best news is that you are alive, have risen up to (no pun intended) and met a massive challenge and for that I truly applaud you.

We are all here for you if you need to ask anything along your journey ahead.

Very best wishes to you and all your family

xxx

Mo

User
Posted 17 Jun 2015 at 23:31

Hi everyone it's Elaine here - Chris is still in hospital (a small drainage problem which will hopefully remain small) so I thought I'd hijack his post a little. Chris's journey... well what can I say... it's certainly kept me on my toes! So much energy and emotion invested these last few months, and most particularly these last few weeks. Whatever gets thrown up next, by having the RP I think Chris has been brave and done the right thing for himself, for us and for our family. I have plenty of optimism for the future - certainly enough to spare to rub off on the man himself :)

I'm so glad we were directed to this site. The comments and opinions have been diverse, honest and invaluable. As Chris has already intimated his mental health can have a significant effect on his thought processes (the words dog and bone come to mind) and the continued support and differing perspectives offered here have been more helpful than you know. So while I'm sorry for the situation that finds us all here, I'm grateful that you are x

Edited by member 17 Jun 2015 at 23:41  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 18 Jun 2015 at 10:22

Hello Elaine,

Please send a BIG WELL DONE to Chris from me and also to you too for all the wonderful support you've given him and will continue to do so.It's been quite a journey for you both but along with everyone else who's been following it with you, I'm so pleased that you've got to where you are and wish you both all the very best during his recovery.

Cobbles

User
Posted 20 Jun 2015 at 10:41
Originally Posted by: Online Community Member
16/06/15

Hi guys yes I've had my radical prostectomy and lymph node removal and some bladder work. Apparently all went as planned with nerve bundle sparing.

No pain in "that" area and catheter ok , but chronic pain in lower abdomen due to the 5 holes thru my muscle and gas in my belly. In for a second night as lumber still draining a lot.

I know u say never look back but I'm slightly annoyed / worried. My surgeon said they could neither see nor feel the Gleason 8 aggressive cancer when they got my prostate out despite this being the main panic , and surprise surprise I haven't seen him since. Just his registrar. She candidly pointed out " you've got cancer and it's better out so u can see ure grandkids" , blatantly not knowing much about me or this journey. When asked why Oncology was withdrawn she didn't know. I just PRAY I needed this doing 😢.

Anyway too late now. I'll keep in touch x

Chris

Hi Chris,

Hope you are feeling a bit more human now. Just as an aside to this. My OH had a cancer that the urologist says he wouldn't have detected on DRE. His prostate was very normal in size and shape. Biopsy detected a gleason 7. On removal, pathology detected a Gleason 9.

In any event, there is no going back. You can't undo anything. You can only move forward. Try and focus on getting better. If it helps, my OH has just started to regain some function seven months on.

I wish you luck, and hope you are home this weekend

Louise

User
Posted 20 Jun 2015 at 11:16

Thanks Louise.
I've had a bit of a rough ride tbh and will have been in hospital 1 wk Monday. No pain down there and doing pelvic floors. Catheter no probs. but 1 of the five holes they made is lividly sore and infection spreading. Can't sit up. I had a mental wobble too which was to be expected. Yes I want to move on and know it's sensible , but I feel quite sad and low. I'm sure we will make it
Chris

If life gives you lemons , then make lemonade

User
Posted 20 Jun 2015 at 12:18

liz yelling who is an ex marathon runner, talks about when you feel rough in the later stages of a marathon (in your case its post operation) its just one step in front of the other, and keep focused on that.

nidge

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 20 Jun 2015 at 23:30
Chris

It's a tough one. My husband had robotic surgery, he spent seven hours upside down with his arms above his head. He had had severe shoulder problems for two years, and came out of surgery in absolute agony. He spent four days in hospital, and like you, it wasn't the pain from the surgery that bothered him so much. He was very down. I think it's a common feeling, but not any less painful for you because of it.

I shall be thinking of you. Try and get your OH or family to bring in some nice food for you. It helps!

Louise

User
Posted 22 Jun 2015 at 08:29

There you go Chris.
Testament that everything you have been through and your struggle with treatment choice has been of benefit to somebody else so it was well worth your while posting your feelings on here.
Well done.
PS Hope today is a better day and that some of the discomfort is being controlled for you

We can't control the winds - but we can adjust our sails
User
Posted 26 Jun 2015 at 11:45
Hi everyone , I'm still in hospital and may be over the weekend Grrr. It's blood related and sudden withdrawal from all bipolar meds to get those bloods right. Can't send me home without re-planning new meds etc and desperately want me to be happy and safe.

I had my catheter removed exactly 24 hrs ago and what can I say !!! It's early days and I don't want to get too excited. I've worn one pad in 24 hrs and only dribbled into it 3 times. I drank water all day yesterday and each time my bladder felt full I simply went and wee'd like normal. I cut back intake in the evening and was genuinely worried about the normal amount that had been leaking from the catheter. However I woke at 3 am dry and went normally , and then again when I awoke this morning.

In graphic detail the urine seems to be "ready at the tip " rather than further in the body but does seem to stay there. If I was to leave it I'm sure it would dribble. And indeed I did squirt trying my pelvic floors and also once doing that disgusting thing men do -- farting haha. So it seems that if I regularly empty I'll be ok but will have stress incontinence. But hey it's DAY 1.

The registrar said she would be delighted to tell my surgeon. They didn't want to get my hopes up but he has been trying something new , and I'm apparently fifth off the line now with this success.

I know you will all say " told you so " and " why worry till it happens " etc , but the fear was overwhelming. And I've not started on the ED journey but feel more hopeful. Love to you all and wishes to everyone on their journeys

Chris xx

If life gives you lemons , then make lemonade

User
Posted 26 Jun 2015 at 12:28

Well done, Chris!

Hope everything continues to go well for you.

Steve

User
Posted 26 Jun 2015 at 15:10

Good man Chris. Early days, as you say, but all sounding good. Keep on in there pal. Small steps.

 

Take care.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 26 Jun 2015 at 17:17

Hey Chris

That's fantastic news about the wee control, well done to you sir, I have been thinking about you everyday and hoping each day you were getting better and stronger.

I saw the surgeon today for the first time and decided Da Vinci will be the way forward, I got home this afternoon and the phone rings, my date is the 6th July for the surgery, totally left winged me, I wasn't expecting that so soon.

Keep doing what your doing my new friend and all the best.

User
Posted 26 Jun 2015 at 17:40

Good evening Chris,

Hospital is a mixed blessing. The best place to be if anything goes awry, but you want to be home, and hope nothing goes wrong.

You have made remarkable progress in regaining your urinary control so soon, rewriting the medical books. And you can be delighted with that. Do not be too disappointed if it you regress a bit, it's normal and natural as your body recovers and adjusts to it's new normal.

Have a good weekend.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 28 Jun 2015 at 14:07

At last out of hospital today after 13 days. El on her way. I'm BUSTING for a pint.
Surgeon rushed my histology due to my blood illness so I will know In 10 days about prostate grade / margins / Lymphs. PSA still 6 wks though.

I desperately don't want to upset others far less fortunate , but my continence remains unbelievable. I accept things could change though. I just want to tell my journey how it is. So I prob won't post for a while , other than to converse with others.
Chris xx

If life gives you lemons , then make lemonade

User
Posted 28 Jun 2015 at 15:23
Chris

Don't hold back post, good news is always a great tonic.

Your first pint will probably taste fabulous after finally getting the go ahead to leave the hospital.

Best wishes

Xx

Mo

User
Posted 28 Jun 2015 at 19:32

Welcome home Chris !!

Excellent news regarding the continence.
Good news about continence is good news to somebody so never be afraid to post.
You know yourself how much you benefited from the experience of others.
Sometimes that experience is negative but no knowledge is ever wasted.

Enjoy your pint. You deserve it!!

Best wishes to you and El and the little man
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Jun 2015 at 20:36
Hi Chris,

Great news you are home and the continence too, gives Stuart a little bit of hope as his op is in 10 days! Hope you enjoyed your well deserved pint too 😜😜

I am sure your lovely wife is also glad to have you back home.

Trish x

User
Posted 28 Jun 2015 at 21:04

yep keep them posts a coming it makes good reading, reading about good news

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 28 Jun 2015 at 21:35

Great news Chris,

You will probably be peeing even more after a couple of pints.

 

Keep us all posted.

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 28 Jun 2015 at 22:41

That's excellent news, Chris. This forum offers experiences of all sorts, and it's great to hear success stories. Keep us informed of your progress and experiences - positive news is always good to hear.

Well done.

Paul

Stay Calm And Carry On.
User
Posted 29 Jun 2015 at 12:16

I agree with all of the others Chris good news should be shared , so glad that you are on the mend and on your way home. Enjoy that beer.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Jun 2015 at 13:51

Been called back tomorrow ( Weds ) 10.30 . Three days after discharge . Exactly 16 days after operation . Just cant understand and asked clarification , but you know how it is . Maybe Histology of prostate / Lymphs back . If it was good news couldn't they just say . Im nowhere near having a repeat PSA ( 4 wks away ) . Does the phrase Shi....ing it mean anything .
I can only wait and see , and report back
Getting kind of bored now . Just desperately need rest and sleep . Im a bit of a wimp im thinking . Awake all night last night as im off all my meds that caused the Neutropenia . But doctor is on it I think . They don't know whether to put me on Lithium again Grrrr , or watch and wait how my mood is . But you cant go on Diazepam and Zopiclone forever can you !!
But heaven to wake up with Elaine and have a cuddle this morning briefly , before " the monster " burst through the door .
Speak soon xx

If life gives you lemons , then make lemonade

User
Posted 02 Jul 2015 at 00:06

Chris, I have seen you respond to others but no update on your call to arms this morning. You might not realise that some of us have been thinking about you and worrying in case you had bad news? Put us all out of our misery :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jul 2015 at 12:08

Chris, this doesn't sound like the kind of incontinence you feared and no, it doesn't happen that people are dry after the op and then it goes downhill. My guess is that you are sleeping more heavily because of the alcohol and so the bladder messages are not waking you up. Yes, the answer is to drink less alcohol or to set an alarm clock for a couple of hours after you go to bed.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jul 2015 at 21:15

Will be deffo cutting back. As you all more than we'll know yourselves we have had a rough few months of it. I didn't want to portray myself as a raving alcoholic haha. I've NEVER in my life drank so much I've wet myself in bed , and I'm not now. For the first 5 days home I was fine , and that included wine and diazepam and sleeping pills ( because my bipolar meds have been removed ). So it was a shock the last two mornings to have a full nappy ( and didn't take pills at all last night ). But generally I've been lucky I know. So easing back the throttle tonight and a traditional cuddle and relax.
Chris

If life gives you lemons , then make lemonade

User
Posted 05 Jul 2015 at 23:03

After the op, your brain has to re-learn the weeing signals, just like when you were a toddler. I have no scientific evidence for this but it seems to me that beer disrupts the new learned signals - John has been dry since very soon after his op but over the five years since, the couple of times he has wet the bed were when he had a skinful. It seems to be only beer - wine doesn't cause the same problem.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jul 2015 at 16:04

Having RP is pretty similar to Caesarean section in terms of which muscles are cut and organs rearranged. I was told not to lift or hoover for 6 weeks but told John it was 6 months ..... and got away with it!

Seriously Chris, it was a pretty stupid thing to do!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2015 at 13:29

I can't think what to say that would make you feel better Chris.

All I can say is that I'm thinking of you and wishing you well, although I know that isn't going to happen in the near future.

You have had a rough ride in life with all your problems and ailments and I suppose life must seem very unfair and for some it is.

El is going to cope, she knows it isn't your fault. Just remember to tell her you love her.

Good luck with the psychiatrist tomorrow. Hopefully he'll have other options rather than Lithium bearing in mind your other problems.

My fingers and every thing else crossable are done!!

All the best

We can't control the winds - but we can adjust our sails
User
Posted 19 Jul 2015 at 16:48

Chris

Understandably, you're feeling on a real downer now. The drugs that help you cope with the bipolar are so necessary - to have them removed will leave you mentally and physically drained.

If I told you things are going to get better, that's no help at the moment. But they willl. Maybe not tomorrow, or next week, or next month. But slowly, hardly noticeably, there were will be improvements.

You have a wife who loves you, a family that cares. You will get through this!!!!

Paul

Stay Calm And Carry On.
User
Posted 19 Jul 2015 at 18:25
Chris

I know from your previous posts you are worried about going onto lithium.

All I can tell you is that my Dad went onto it shortly after having 5 lots of ECT, in his late fifties. He was still taking it 15 years later when he finally succumbed to oesophogal cancer. He drank almost every day and ate just what he fancied. It completely stabilised his illness. The only obvious side effect was his gait which became slower and more exaggerated. It never caused him any kidney problems at all.

I know the mood swings will be hard for you right now, so many changes to your meds and so many major upheavals. Thank goodness El seems to be able to cope with it all as well as looking after your family.

The kids at school would want you to be there next week but I am sure they will also understand if you cannot.

You will get through this just try and have faith in yourself as you have been doing brilliantly and also helpng so many others with your posts.

xx

Mo

User
Posted 30 Jul 2015 at 18:24

Originally Posted by: Online Community Member

Hi Luther
I know you said not to check , but he phoned me . Im honestly not panicking I swear . Im starting ED clinic 3rd Aug , and full results 12th . It is definitely 1.5 . Doctor said it might be where they left prostate on the nerve bundles . My PSA was also very high to begin with compared to most people . It was 43 just prior to surgery and had been rising 5 points per month . There was an object of interest on my bone scan ( 2 ribs ) but they rejected it as a previous trauma .
What do you all think ? Doom and Gloom ?
Chris



Nope!... Not all doom and gloom by any means Chris!

Until you get a full appraisal from the main man it's not in your interest for anyone to speculate......we are not medics after all!

Wait until you see 'the main man' on the 12th and he will no doubt explain everything...

Meantime, try not to get stressed out over this result when you've not got the full picture / explanation etc. 

Many many options available to you if needed in any case..

Best wishes 
Luther

User
Posted 30 Jul 2015 at 20:13
Hi Chris,

I'm sure things will be fine. I expected my PSA to be lower after radiotherapy but it was 1.6. It took until recently for it to drop to 0.083 and I'm hoping it will go lower.

I think you still have the option of radiotherapy, a lot seem to have it following surgery so that's the chance to zap any remaining cancer cells. Try not to worry. At least you have the chance of other treatment options.

Take care.

Steve

User
Posted 03 Aug 2015 at 13:36

Chris, believe it or not I see a lot of positives in this post.
The most important one as far as your relationship goes is that you know Elaine loves you,no matter what. You were already Proficient in experimental sex from how I read between the lines, so for you two it's virtually business as usual from that point of view.
It's excellent news that your libido has remained high, some men lose that.
As for the pain. I'm surprised your nurse said it was unusual.
I know John didn't go the surgery route but even so, the pain he had on ejaculation was enough to take his breath away for quite a few seconds. He also had the shooting pains, especially when going to the loo, so since all that area has been messed around, whether through surgery or radio then why wouldn't it react with pain
Having said that, maybe because you have that experience there is no "oomph" in finding alternatives?

You are also very very lucky that you have an understanding ED nurse to guide you through what you can use. Even, by the sound of it, presenting you with real alternatives.
The only thing you don't mention and I assume it was said to you, is not to take the sildenafil (Viagra) and cialis together or within a certain time of each other. Unless that info has changed?

Yes it's a shame that your PSA looks like further treatment is necessary but none of these things can be predicted when you go down for the op. You know from your reading on here that very few of our men react the same as another with exactly the same treatment.

You can only make your choice and hope it it the right one for you.

Try and keep positive Chris. There is still much to be thankful for. The love of a brilliantly supportive wife and your own little soldier who I've no doubt is just glad daddy is there for him (or would be if he was old enough to understand the whys and wherefores.

Good luck Chris J. Wait for the result for the MDT/surgeon's meeting before getting too downhearted.
All the best
Sandra

Edited by member 03 Aug 2015 at 14:06  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 03 Aug 2015 at 19:21

Hi Chris,

I, like others, share your concerns and struggles. I also was terribly disappointed at having salvage treatment so soon after a RP.

Am amazed, too, at how well I am coping and dealing with it all. Needless to say we all have different coping abilities and strategies. Mine is to treat Pca with the disdain it deserves, put it in a box and deal with it only when it misbehaves and to carry on to squeeze as much juice out of my 'here and now'.

Like me, you have an invaluable asset: a supportive and understandable wife. It's a tough journey but not a lonely one.

Nearly 6 weeks now since taking Casodex. No side-effects seen or felt. Waiting for my RT (33 sessions).

Pleased that my latest PSA was 0.03, the lowest it has been!

I've accepted this secondary treatment (HT for 2 yrs) as a fait accompli.

Regards,
Jacey

User
Posted 03 Aug 2015 at 22:46
Chris

Sandra has posted another fantastic response not much I can add.

Just posting so you can really see we are all looking out for you.

Xx

Mo

User
Posted 03 Aug 2015 at 22:56
Chris

You know we're all rooting for you and El, you'll work it through - you've been through worse than this!

Best wishes as ever

Maureen & Steve

X

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 12 Aug 2015 at 20:52
Chris and El

Our pms have probably covered most of what I could and have said. I am so very shocked and sad that the pathology has come back the way it has. I know this is going to present a whole new set of challenges to you both.

I cannot put myself in your shoes it has taken me a long time to realise only the man himself can be there.

Nothing more I can add right now other than to say there are a whole gang of us here ready to give you any support and help that we can.

Xxx

Mo

User
Posted 12 Aug 2015 at 23:10

Just to say thinking of you and Elaine Chris.
Best Wishes
SAndra

We can't control the winds - but we can adjust our sails
User
Posted 13 Aug 2015 at 00:32

Hi Chris

At times like this, words are not enough. You have the love of El and your family. I truly hope you can still overcome all that has been thrown at you.

Paul

Stay Calm And Carry On.
User
Posted 13 Aug 2015 at 05:51

My thoughts are with you Chris. Your strength on your journey has been an inspiration to me and others.

Dick

User
Posted 13 Aug 2015 at 09:17
Hi Chris

Sorry the stats were not what you were hoping for, I know how that feels mine came back at 0.42 after RP and a rapid doubling time of 6 weeks. They wil want to keep you off of hormones until the choline PET/ CT scan is completed, but then I assume you will be given hormones to reign it back until treatment by RT is being carried out. They will probably want you to be on hormones for a few months prior to being zapped daily for several weeks and continue with the hormones afterwards. If it's any consolation I had spread to both the bladder and the prostate bed and the RT took care of it, but in my case it's now been found in my pelvis so the fight continues for me.

All the best

Roy

User
Posted 13 Aug 2015 at 11:10
Originally Posted by: Online Community Member

Regarding salvage RT , have any of the brains on here read that it should normally be started before the PSA gets to 1 to be effective , especially where original Gleason and PSA were high and also the doubling velocity was high ( mine was racing pre-op). I think that's why they removed the RT / HT route in the first place. Lots of questions to ask Onco but I hope he is so truthful. I've always been told on here not to rush into any decisions , and would not want unviable treatment that would make me really ill. Sounds silly but I'm not " ill " at all in any way at the moment
Regards Chris

I think the onco will want to have scan results and all your data before s/he answers that question Chris - if they offer you curative RT it will be because they believe it might work. I don't think the NHS offers treatments just to make people feel something is being done.

We did have someone else here fairly recently (name escapes me right now but it will come back to me) whose first PSA post-op was in the region of 4 and I am sure they had salvage RT so I don't think there is a set cut off point of 1

A few weeks ago, you thought being diagnosed was the worst thing ever and then you believed having treatment was the worst thing ever. You survived both. You will survive this as well :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Aug 2015 at 15:26
Chris

I am sorry to hear of your news. So far I haven't had to travel the road you are on so I am not qualified to comment on the treatment you will receive. However, even though we do not know each other, I wanted you to know my moral support is behind you all the way.

You may disagree but I can see much positiveness in your posts and you come across as very supportive of others on the forum.

Whatever the future holds I wish you and your wife well. Make the most of your family holiday.

User
Posted 13 Aug 2015 at 16:50

Hi Chris,

Just read your histology report........not the best news you could have had, and I'm gutted for you.

Your treatment path will now depend on the results of the PET scan together with all the other data available I would think.

I'm way out of my depth when it comes to any medical advice regarding possible treatments  etc....so will leave that to the medics and more experienced members of this forum who have a similar diagnosis.

Just want you to know that you and El are in my thoughts, and I know you will find the strength to fight  this together in your own way.

Enjoy your forthcoming holiday..

Best Wishes
Luther

User
Posted 13 Aug 2015 at 20:14
Hey Chris

I told you we were all here for you, wow even Raiden has posted, even though I know you two talk regularly.

Raiden I am really pleased you posted I hope you are doing well, you guys all look out for each other and that is so very important.

Have a fantastic holiday Chris and come back focused and ready to take on the next steps. You are doing so well dealing with this in the best way you can.

My very best wishes to you, El and your family

xx

Mo

User
Posted 13 Aug 2015 at 22:24

Have great empathy for how you're feeling, Chris!

Felt saddened and dismayed by your post-op results. Am having salvage therapy though, of course, your clinical profile is different from mine.

Do feel free to PM me if you wish at any time.

Have a safe and restful holiday!

Jacey.

User
Posted 13 Aug 2015 at 22:48

Hi Chris,

Having had a few hours to consider your position, and also to look at your previous posts and hopes, and various responses from others, I think I would change the options or advice I have suggested for you now that things are, hmm, interesting, or different.

Whenever any of us starts out on "The Journey" we all have the same range of potential outcomes. Either good or sadly tihs. I am really sorry to read that you did not get the good one mate. When I had my follow up after my op, I determined that IF I was told actually "Dave, it's all gone "pu stit"" ( please read this backwardly) and your time on this earth is limited, I would enjoy whatever time I had left, in whatever way I could and do it to excess. Have you seen Scent of a Woman? If not do so.

Please ignore my suggestions that you should be causes about anything, yanking, tugging, pulling etc. Please just consider enjoying life and fun.

ATB to you and El. You are both so fortunate to have each other, you are blessed. Dealing with any of this parc on your own is hideous. You have each other. Wow, lucky you both.

really seriously, a heartfelt atb to you both

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 13 Aug 2015 at 23:17
Hi Chris,

You certainly have had a rough few months and those results must have been a blow. As others have said you have been so strong so far and I hope you remain as stoic and move onto the next phase of the treatment and hopefully beat this.

Enjoy your holiday and I wish you all the best for the battle ahead.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 25 Aug 2015 at 19:44

Hello all
Purely an info post. Home from hol and was supposed to see Onco tomorrow Weds. But had Oxford Churchill Hosp fone today asking for Choline PET-CT this Thurs. I obviously questioned this arrangement so now scan Thurs and Onco at Southampton next Weds 2nd. Gosh the waiting ( especially thru our holiday ) is killing us.
Good news is the scan is at 3.15pm and won't finish till 6pm , so I've booked the Premier Inn for steak and wine overnight. It actually makes sense as they said to stay away from my 5 yr old son for a good time ( honest Gov'ner).
So all will become clear next Weds for good or bad., and an action plan to follow
Many thanx and hopes and wishes on your journeys
Chris and El x

If life gives you lemons , then make lemonade

User
Posted 25 Aug 2015 at 20:34
Good luck on Thursday Chris and enjoy night away fro the little one!!

User
Posted 25 Aug 2015 at 20:49

And hopes and good wishes on your journey too Chris.
Good luck and all the best to you and El
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 Aug 2015 at 21:08

God luck for those dates Chris. Hope you all had a good holiday?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 25 Aug 2015 at 21:34
Hope you had a good holiday.

Wishing you all the best with your forthcoming appointments.

User
Posted 25 Aug 2015 at 21:40
Good luck Chris

Xx

Mo

User
Posted 25 Aug 2015 at 22:34
Good luck, Chris

Arthur

User
Posted 25 Aug 2015 at 22:58

So pleased to see that you have been offered the PET scan - usually, we are reading about people having to fight to get one. Give the little'un extra cuddles tomorrow x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Aug 2015 at 09:29

Best wishes Chris. Hope the holiday went well. Good luck with the treatment.

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 03 Sep 2015 at 20:06
That is shocking Chris

Get your medical team at home onto this. To cancel once was bad but twice given your known BP issues and concerns over your PSA is outrageous.

I really am so sorry

Xx

Mo

User
Posted 03 Sep 2015 at 22:08

It would have turned me into an angry young, sorry, old man. Hope it all works out in the end.

Paul

Stay Calm And Carry On.
User
Posted 04 Sep 2015 at 10:34

Chris, I am around Monday and Tuesday next week, away about 9am Wednesday, so you can use either of those 2 nights if it suits your needs?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 04 Sep 2015 at 14:08
Hi Chris,

Hope it all works out ok for next Thursday. It's very frustrating when you're waiting for something to happen.

Best of Luck,

Steve

User
Posted 04 Sep 2015 at 15:56
Chris

I guess when it comes down to specialist radioactive dye and the like then they cannot take any sub standard products! I know they are made specially and have to be used within a specific timeframe. It doesn't make you any less frustrated but at least it is a good reason for the cancellation at such short notice. I love your comment that you are too busy to be bipolar, just brilliant!

I will be thinking of you next Thursday although I probably won't be able to access the forum to see any posts until the following week.

I keep my fingers and other extremities crossed in the hopes that this will be 3rd time lucky for you.

all my best wishes to you and your family

xx

Mo

User
Posted 10 Sep 2015 at 18:49

Hello all
Thanks Maureen for your lucky mojo -- we've both succeeded this week ! Third time lucky I today had Choline PET-CT scan at Oxford Churchill NHS. I had to come on my own as El was taking her son to Portsmouth university where he will be for 3 yrs. I said I'd be fine on my own ....
It went like clockwork tbh. I sat in my private booth having been injected , and instead of doing my puzzles / reading the paper , found myself sitting back for an hour and reflecting on my past life , pondering on my present life , and predicting my future life ! An hour rolled by quickly and the scan lasted exactly 45 minutes. Only the air-con could be heard. No music this time. I admit to a few tears rolling down my cheeks just wondering why and how my life has come to this !
Anyway I'm at a Premier Inn now fed and continuing the watering , not being allowed to be near Peter for 8 hrs. Glad of the peace yet wanting to be near them all. Oncologist next Wednesday 16th. Trying not to be negative but I have a good idea where life is going. But we will make the most of it.
Best wishes on your journeys
Chris

If life gives you lemons , then make lemonade

User
Posted 10 Sep 2015 at 19:54

Glad that's over for you Chris.

Peter will just get bigger hugs that's all (and perhaps a little pressie?)


Quiet reflection comes to us all at some stage. Mine is usually in the middle of the night and stops me sleeping. I honestly cannot remember the last time I had a nights uninterupted sleep.

When you've had major, very major stuff happen in your life like you have it's bound to creep up on you when there are no distractions.

The key is whether you can view those changes, accept them and then move on with the next stage of your life
(Which you surely will)

Edited by member 10 Sep 2015 at 19:56  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 10 Sep 2015 at 19:59

Third Time Lucky - Brilliant news Chris. Glad that's all over.

I'll be thinking of you for next week Chris. It'll be the day after my op but I'll be tuning in.

Take Care Mate,

Cobbles

 

 

User
Posted 10 Sep 2015 at 20:00

Great to hear Chris that they finally got the scan sorted.  Hope they'll point to something positive (and they don't get lost in the process!)

Flexi

 

User
Posted 11 Sep 2015 at 03:35
Hi Chris,

Really pleased you finally had the scan and hoping that everything is ok when you get the results.

I don't think you can help but have the thoughts that you had. I certainly did and they helped me assess what was important in my life. Sometimes life passes us by because we're too busy trying to cope with work and paying the bills. You suddenly get the thought "where did it all go". Having difficult times make you appreciate the good times even more. Every moment I spend with my grandson is precious to me. I sometimes feel guilty because I wonder if I felt quite like this when our children were small. I think I feel this way now because I don't take "being here" for granted. Life can so easily be taken away. If there can be a positive side to being diagnosed with cancer (or having a heart attack) it's the realisation of that simple truth.

Try not to get too stressed waiting for the results (easier said than done, I know).

Take care.

Steve

User
Posted 11 Sep 2015 at 08:26
Originally Posted by: Online Community Member

Have a beer for Steve, he has to be tea total whilst he's having radiotherapy, apparently it's not much fun ordering a glass of squash in a pub (not allowed anything fizzy either

WHAT. you're kidding me on !!As if it's not bad enough already. I guess RT is out then for me haha. Don't be surprised if Steve has to " work extra hours " quite a few nights over the next 5 wks. Poor fella

Hope it continues to go well for him x

If life gives you lemons , then make lemonade

User
Posted 16 Sep 2015 at 23:25

Hi Chris,

I haven't been posting or replying very much (I just needed the break) but I have been reading and your struggles are touching me ,sometimes I do think to be given a diagnosis and I know how hard you struggled with the op of maybe a cure is sometimes harder than where we are.

So Bottoms up my friend enjoy a glass or two . Thinking of you and Elaine.

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Sep 2015 at 12:07

Hello Chris.
I've been quiet(er) too as we lost the router on Friday and didn't get the new one till yesterday when I could get back online. Got a new phone too which wasn't much help with the logging on and when I did try to reply it came out as if I'd never been to school!!

Anyway, not much I can say really as far as advice is concerned but just wanted  to let you know that I do think of you often (and all you men that struggle with difficult diagnosies ).

A second opinion can't be a bad thing though can it? At least you will know that you've been proactive and then can perhaps accept the diagnosis and the treatments that go with it.

Good luck and best wishes to both of you

Sandra

Edited by member 17 Sep 2015 at 18:29  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 17 Sep 2015 at 14:49

Hi Chris,

 

I would suggest a second opinion- but in a different (geographical) area.

My onco recently referred me to another area, without any prompting from me, and it does open possibilities, different approaches to treatment and perhaps different funding structures.

Dave

 

 

 

 

 

Not "Why Me?" but "Why Not Me"?
User
Posted 17 Sep 2015 at 20:32
Chris wish I was knowledgeable enough to know what to say.

Thinking of you both,

Love Trish xx

User
Posted 17 Sep 2015 at 21:17
Hi Chris

The Choline PET/CT scan has its limitations as you know at lower PSA levels it doesn't always take up enough Choline to show up on a scan, so maybe it was performed to early, so are they willing to repeat the scan at a later stage if the PSA continues to rise.

I underwent a PET/CT scan in Munich utilising 68Ga-PSMA which is able to pick up spread at a lower PSA, but this was privately funded by me as it is not available under the NHS. The procedure is different in that the PSMA is injected and also contrast under pressure whilst in the scanner as it has a very short life span, but the clarity of the scans are amazing.

All the best

Roy

User
Posted 18 Sep 2015 at 08:24

Hi Lyn
Yes next PSA apparently wont be for 3 months before the RT starts ( or deciding if the RT starts ). I pick up tablets and start them Monday and my GP will measure it for me . Surprisingly it was ME again who requested a PSA on Wednesday . They weren't going to do it. Interesting comment you made about another hospital maybe not bothering to offer RT . As I spoke to you before , I'm not on a death-wish but at the same time don't want to feel ill and have side-effects if its not going to work. My doc gets that and my "wider" health picture. You are bang on the money ( again ) as he stated I was a strange case and that they couldn't understand how it had got so far despite all the tests , biopsies , scans !!
Thanks
Chris

If life gives you lemons , then make lemonade

User
Posted 18 Sep 2015 at 13:53
Hi Chris

Just a note to wish you all the best with your forthcoming treatment. I hope it all works out for you and side effects are kept to an absolute minimum.

Kind regards.

Edited by member 18 Sep 2015 at 13:54  | Reason: Not specified

User
Posted 18 Sep 2015 at 21:31
Hi chris,

Frustrating for you. Hope you soon find out what's causing your psa rise so it can be managed appropriately. In the meantime I hope the bicalutamide works for you.

Lesley

User
Posted 18 Sep 2015 at 22:53
Chris

I hope the tablets start to work quickly for you, on a good note you have several months to get used to the taste of flat scrumpy Jack 😉

Steve is raising his glass of J20 to you! (this weeks' non alcoholic drink choice)

All the best, as ever

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 19 Sep 2015 at 09:35
Hi Chris

I've been on bicalutamide for 5 weeks now and it's lowered my PSA from 9.2 to 1.3 so hope you see a big reduction.

Roy

Edited by member 19 Sep 2015 at 09:46  | Reason: Not specified

User
Posted 19 Sep 2015 at 10:57
Chris

I am so pleased that you have got some more professional support, sometmes who you know is an advantage over what you know. At least now you can feel confident that the specialists looking after you are recognised locally as being the best.

All my best wishes

xx

Mo

User
Posted 20 Sep 2015 at 08:37
Hi Chris,

Pleased that someone is listening and helping out. It can be very reassuring when someone takes time to explain things to you.

Hope everything goes well with the new tablets.

Keep fighting.

Steve

User
Posted 05 Oct 2015 at 15:28
Dear Chris

This may not help now, but once you get started on the treatment it may not be as bad as you fear.

Not everyone has all the side effects of HT, some people have some, others have very few.

This tiredness I think is normal at the start of these drugs, and yes, it has been a blow that the RP did not work.

Our situation was slightly similar in that my OHs op was cancelled on the operating table as the node spread was there discovered. A real blow in that they did not tell us this til 36 hours later as the surgeon had gone home and everyone else was acting dumb!

So we know how low you are feeling. But there is a plan b, and you have started upon it.

Please keep with it, the days to come maybe dark, but better to spend the winter this way, than the summer when instead you could be out and about.

Once RT starts the time will pass quickly.

All the best

Alison

User
Posted 05 Oct 2015 at 19:28

No one can make you have RT and it is your right not to take the hormones if you don't wish. But I think you are comparing apples with pears to be honest. Comparing how you might feel on HT with how you feel without HT - comparing what a drag RT in the winter will be like with a winter staying at home cosied up.

That would all be fine if it wasn't for the fact that life without any treatment will not stay the same as it is today. At some point, the untreated cancer would run amok around your body and make you feel much worse than the hormones will.

So don't compare being on HT with how you were two weeks ago before HT started. Compare being on HT with being in the end stages of an uncontrolled cancer.

You may be aware that my father-in-law decided not to have any treatment because he was worried about side effects. He lived for 4 years. It was his right to make the decision but I think if he had known how quickly he would be taken, he might have had a re-think at some point.

There is no reason why you have to have the RT in winter - research is starting to show that the longer you take HT before starting RT the better and many oncos seem to go for 9 months now rather than 3 or 6 months. Perhaps you could stick with the HT for now and leave the RT question to one side until next spring? If it is any consolation, many men report that the initial side effects of bicalutamide settle down after the first couple of weeks so you will not necessarily feel the same this time as you did last time you were on them.

Lots to discuss with the psychiatrist tomorrow x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Oct 2015 at 16:02

Hi Chris, in the wars again eh? Bless you.

Adhesions can be very very painful so perhaps your GP friend is right.

Won't comment on your planned RT as that is for you to decide, just wanted you to know I'm still listening - so rant away.

We can't control the winds - but we can adjust our sails
User
Posted 18 Oct 2015 at 16:04

Chris,  I'm still very new on this site, but my thoughts are with you my friend.

User
Posted 18 Oct 2015 at 16:59

Hi Chris,

I may be totally wrong, but your symptoms sound similar to what I had a couple of months ago, pain urinatiing, occasionally passing blood, a dull but noticable pain whenever I sat down, and after a few weeks of that I started a bit of a fever.

My GP tested for urine infection and all was clear, it was my Consultant who diagnosed an infection of the prostate, and that was 6 months after the intrusion of brachytherapy.  6 weeks worth of antibiotics seem to have done the trick as I am feeling much better now.

Only two days to wait, I am sure your guy will sort it out?

:)

Dave

User
Posted 11 Nov 2015 at 18:26

Hi Chris,

 

Did the onco mention the possibility of blasting the cells with chemo too?  I seem to remember reading somewhere about possible combination therapy. I'm hoping Lynn knows more - Lynn?

Flexi

User
Posted 11 Nov 2015 at 20:26
Chris

that sounds like a terrific compromise, you get to do the best you can through winter and in particular Christmas which with a little man in the house should be a special time always.

In springtme you have all the joys of summer to look forward to your RT will be done and your cancer given a really thorough bashing. Then the recovery really begins, it may be slow in some areas but it does give you the best fighting chance of all. I bet El is chuffed to bits today.

my very best wishes as always

xxx

Mo

User
Posted 11 Nov 2015 at 22:12

Hi Chris,

I very much echo Dave's sentiments. You and I started on this strange and often frightening journey together. Luckily, at the moment, I have been more fortunate with my outcome. I truly wish you well with the future treatments.

Look after yourself.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 12 Nov 2015 at 02:36
Hi Chris,

I just wanted to wish you all the best. You know we are always here for you. I'm not that far away from you if you ever felt like meeting up for a drink and a chat.

Keep in touch.

Steve

User
Posted 12 Nov 2015 at 06:46
Hope you enjoy the next few months as much as you can Chris, hopefully with little pain and some great fun over Xmas. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 12 Nov 2015 at 08:33

As always Chris you have my very best wishes.

I am sad that you have to go through yet more stress.

I hope the ensuing months of quality time with the family give you the boost you need so that when April comes you are stronger in mind and body to cope with it all.

Thinking of you

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Nov 2015 at 09:14

Wishing you all the very best Chris.

Pablo

User
Posted 13 Nov 2015 at 15:18
Hi Chris

Just a note to wish you all the best with your forthcoming treatment and treatment plan.

I very much hope you can get through Christmas and the winter months. Thinking of you.

I would also like to thank you for the help and encouragement you have given me with certain issues I still have. This is appreciated more than words can say.

As you will see the strength of the forum is behind you and I hope this will help you in your darkest moments.

Kind regards.

User
Posted 13 Nov 2015 at 19:07
Hi chris

Wishing you well, hope you manage to plan some happy things to do over the next few months before your planned radiotherapy.

Although I find xmas can be stressful with all its planning I find the lights, xmas carols/music, food etc quite uplifting to my spirits. Hope it will be uplifting to your spirits also chris.

Take care,

Lesley

User
Posted 13 Nov 2015 at 19:17

Hi Chris
Wishing you all the best with you future RT. Just finishing my 37 sessions. The radiotherapy staff are brilliant, you'll be well looked after.
All the best
Colin

User
Posted 02 Dec 2015 at 18:28

I like to have all the paperwork relating to John's cancer and everywhere we have been I have asked for it. If I am any missing I ask the GP receptionist to photocopy their copy and let me have it and so far they have been very willing.

If you really want to have a record of the processes you have gone through then perhaps ask the receptionist?

I am sorry that the written words you did see offered you no encouragement.

Easy for me to say but forget March for now. Live for these magical times for Peter, make his memories now while you are fit enough to enjoy them with him.
March will come quickly enough I know, but there is nothing you can currently  do so  make the best use of the season.

You will get pleasure (and sadness) out of it I know but do your best for your little man.

Chin up young man. You can do it. x

Edited by member 02 Dec 2015 at 18:39  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Dec 2015 at 18:42

Really feel for you Chris, sorry how you and Elaine had to read the letter on GP screen not the right way , if I remember he was not positive previously and urologists was more hopeful have you heard anything from him, keep going mate will be thinking of you Andy

User
Posted 02 Dec 2015 at 19:32

Hi Chris

Sorry to hear this, not the proper way to find out.

I didn't have all the paperwork either until I asked for copies to take for a second opinion, these were given with no problems as you are entitled for a copy as it is your personnel details.

I really believe that given what was in the letter you should have been informed.

Sandy

User
Posted 02 Dec 2015 at 21:58

Hi Chris,

Not the best way to receive such news mate, it should have been handled very differently.  You are not the only one to be given bad news handed to you like a house brick in the face.  One of my PSA tests was given to me verbally as thew wrong number and when I asked about the apparent rise, and expressed concern, the Doctor told me that "You don't need to jump off a bridge yet".  Knobs all.

Chris, you have come along so far since you started, and overcome and dealt with so many issues, and the next few months will be no different.  You may get to March and bottle out, but you have thought that before, and then you have summoned the courage to crack on and move forward, get treatment and move on.  

And if you have a wobble, a big wobble or a total melt down, we'll be here to steady you young man.  And we will all cross that March bridge with you when it comes.

You have a good weekend, plan to have a great Christmas, put OTT lights up, put cheesy songs on and enjoy.

atb

dave 

    

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 03 Dec 2015 at 00:32

Well you know my view - I think it will be fine to get to March and decide that RT is not a sensible forward plan. I assume that what the onco was saying was that because he doesn't believe the remaining cancer is in the prostate bed, RT to the prostate bed is a bit like a shot in the dark. So be it - maybe after the winter you could push for a repeat scan or get onto the trial John is doing with the new super sensitive scanning agent to see if any hot spots show up? If at some point in the future the scan produces a glowing area you might feel that RT to that area has a purpose and that would make it much more a good option.

No point stressing now though - you can decide you aren't doing it (but not actually tell the medics that yet), put it away in a box and get on with coping with everything else.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Dec 2015 at 00:35

Chris

It is reading stories like yours that make me realise how lucky I am. I hope you will be able to face everything full on when the time comes. Meanwhile, have the very best Christmas you can.

Paul

Stay Calm And Carry On.
User
Posted 03 Dec 2015 at 09:59
Hi Chris

I am so sorry to hear this news but the strength of the forum really is behind you all the way.

Thinking of you at this difficult time. You may not agree but from the way you have handled your PCa journey and associated problems you have earned my utmost respect and admiration and this has helped me with my own journey (which is nothing as difficult as what you are going through). I cannot thank you enough for this. I do hope that somehow it will all work out alright in the end for you and your family.

Sending you my best wishes.

User
Posted 04 Dec 2015 at 13:59

Read your thread pal.
As commented by William what a strong mindset you have.
Have a brilliant Xmas.
Adios

User
Posted 05 Dec 2015 at 21:53
Chris,

I just wanted to add my thoughts this journey can be pretty darn Tish at times. Even though I try and do my light hearted posts I know that most will read between the lines and see how I am really feeling and thinking. Never be afraid to express how you are feeling on the forum quite simply we get it, we understand, and we are here listening and supporting.

You have come so far and you can continue , with all of us behind you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Jan 2016 at 22:20
So I hope you are not expecting a normal not humours reply from me.

So firstly I will get the slushy stuff out of the way have to say what a diamond you are, your responses and commitment to the forum well they just blow me away. What a Guy . I don't think you realise just how much you help others with your comments. Honestly admiration in buckets😍

So this stump that you are talking about we haven't been offered this ( sorry just re read pump)😉 Ok I get it know sorry can't offer any advise on a sexual nature although in my hey day ( see avatar) 😛Give me a glass of Pinot and wind and grind reggae tune well whoooo hoooo. I hope you are smiling know.

I don't know anything about bipolar but depression with living with PCa well let me tell you I am thinking about writing a book, this roller coaster that we are all on is so so hard , most people my self included try and write positive things for others to read but honestly if I wrote my actual thoughts then it would be whole different story.

Never feel that you cannot reply on my thread no you are not in the big boys camp (HELL No ) and fight to stay out of our camp , give it everything that you have. I know it is hard for you but go for it.

Divas what can I say , I just love a diva it makes my day, Diva away and be proud🤗

Having failed my doctorate I would say the swelling is fluid But get it checked with your GP , Trevor has swelling in his neck and this has been for probably 2 years plus the sad thing is when we get a diagnosis of cancer then every lump , bump , ache , sneeze, or fart sends us into a spin.

I have emptied my inbox so if you want to pm me then pm away.😘

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Jan 2016 at 22:32

Evening Chris my man.
What's wrong with the occasional whinge - you've certainly got enough to whinge about, you and some of the others.

A lot of us are more fortunate than a lot of others but it all helps put things in perspective doesn't it. Well it does for me anyway.

Have you asked the nurses on here for some interim advice? They might point you in the right direction.

Anyway, just wanted to say sad for you that your heading towards the dark place. I hope the Anniversary tomorrow is a great one. Whether you celebrate it with a bit of "artificial" help or just a cuddle, you'll be sharing it with the love of your life with the added bonus of "the little soldier" adding to your excitement and pleasure.

You're still here to celebrate it and they'll be plenty more yet.

All the best for a Very Happy Anniversary

Edited by member 28 Jan 2016 at 22:33  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 29 Jan 2016 at 03:33

Hi chris
Happy anniversary
Enjoy the day with your OH

Regards
Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 29 Jan 2016 at 08:45

Hi Chris,

Have a very Happy Anniversary!

I'm sorry you have been suffering a very low mood, it's hardly surprising with everything you're going through.  I've had an awful month so I totally understand how you feel.  I haven't felt like posting because I feel ashamed I feel this way.  I've just wanted to sleep.

Anyway, stay strong and try to enjoy these special moments (anniversary).

Best Wishes,

Steve

User
Posted 29 Jan 2016 at 10:53

Hi Chris. Thankyou so much for your contributions that make us feel better. I hope you enjoy a wonderful anniversary with your wife. Georgina

User
Posted 29 Jan 2016 at 12:06

Hi Chris,

Like you my sleep paterns have been all over the place recently.

One of the problems is that because I am retired I can lie in untill 9 or 10 in the morning, and often do when I haven't got to sleep untill 2 or 3 in the morning.

There was a programme on telly the other night, which amongst other things tackled insomnia and highlighted the fact that we need daylight to set our body clock's rythm.

So last night I set my alarm clock so I was up promptly at 8 this morning, hopefully that may help me tonight, I will let you know how I get on.

AND don't worry about being depressed and grumpy, we are all at the Victor Meldrew stage of life, I only have to switch on the TV or radio news to get angry about some dam fool politian talking rubbish, so just accept it is something that goes with getting old.

After all, it is being so cheerful that keeps us going!

:)

Dave  

 

User
Posted 29 Jan 2016 at 18:06
Hi Chris just to say I hope you and your wife are having a lovely anniversary - Paul and I are 24 years this April can't believe where the years have gone. You are always there to support others including me so yes you are certainly entitled to share your feelings when are you low and hopefully we can help you. Jayne x
User
Posted 29 Jan 2016 at 21:19
Chris

you are doing so well, I have been really pleased to see you constantly supporting other people and now you are posting on your own thread. First time in a while but I know that you will be looking to all of us to help you as much as we can as your treatment gets nearer. We will be here.

xx

Mo

User
Posted 14 Feb 2016 at 05:33

hi mirellen
I take it then as of yet you are still waiting results, until you receive these then you will not be able to start to even think about treatment

it may take two weeks before you receive the results of the biopsy

whilst he is away I would send for the 'toolkit' off this site, it will help when you discuss treatment
don't jump the gun on treatment options as I did this only to find that my only treatment is hormone therapy

as for making choices I wanted to know as soon as possible ,

http://prostatecanceruk.org/prostate-information/getting-diagnosed/staging

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 14 Feb 2016 at 07:28

Hi Mirellen
So sorry you both find yourself in this position , truly. You have to remember I'm bipolar and seem to be mostly depressed. This has been made worse by the cancer. It would be good to start your own post so that you will get loads of advice off some truly lovely people. This cancer , can , apparently be cured if you get at it quick enough.
You asked me to be perfectly honest. Am I glad I had surgery ? No. I have spread to bladder and lymph nodes. I'm continent but fully impotent which is actually quite slowly driving me insane. I've been in pain in my abdomen ever since the op. I'm on HT but feel tired and sad and emotional all the time. I have 33 RT ahead which I actually really don't want at all. Probably followed by more hormone therapy and then somewhere down the line Chemo.
I had lots of help from many people but I think what Luther said stuck in my mind most. He said make sure you can look back in 5 yrs and say you did the right thing. At the end of the day I've done this for my family which includes a soon to be six year old boy. I'll know I've tried and I've had to be a "man" , if that's what being a man is. If I was on my own it wouldn't have happened.
Wait till you have the full results , read this site's publications , sit back a while , then go from there. Be guided not rushed. Write EVERYTHING down in a diary.
I wish you both all the best
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Feb 2016 at 09:34

Chris, as usual I read your post with great sadness. Yes, you have "manned" up and I admire you greatly for that. To suffer PC and to be left as you have would be a strain on anyone but to suffer bi-polar as well must be a nightmare.

Did you make the right decision? It was for the little man and that lovely wife of yours so in that respect yes you did. Was it right for you? You've answered that haven't you. If you had been on your own you would have left it. That too would have been a "right" decision because it was yours to make

MIRELLEN, as has already been suggested it would help you more if you started your own conversation because not every member reads everyone else's post.

Nothing can be done for your husband at the moment until you have all the scores. If he is stubborn or has already made his mind up regarding no treatment, well you know him best, and perhaps he'll stick to that.
However, if you have The Toolkit handy and you have read it ahead of his getting home then you will have information that he can base decisions on, assuming he would even look at it of course.

There are also the nurses on here if you want to chat to them and ask them specific questions.

He has low(ish) PSA and a slightly larger prostate but if it hasn't spread there are a number of options available to him, one being Doing nothing at all. This is called Active Surveillance and is offered to men with no spread and cancer contained.

He would have nothing done but regular checkups.

Don't jump the gun by thinking the worst or by researching possible treatments because some of them may not be relevant and you'll just confuse yourself.

At the end of the day, he (and you) has to live with whatever decision he makes, hopefully he will come round to being more amenable to discussing it all.

I know it's a dreadful worry for you because, at the moment, you see it as a life threatening illness and you will understandably want him to do all in his power to get rig of it.

There is no right and wrong answer to what decision to make because each one is personal to us.

I wish you both well in the coming weeks and months. You have found us now and we are here for you if you just want to talk.

All the best - Sandra

We can't control the winds - but we can adjust our sails
User
Posted 14 Feb 2016 at 14:17

Hi Mirellen

I know exactly where your OH is coming from. It's a long time ago now but I saw my father die of prostate cancer in 1971 and it was painful and undignified. I can also fully understand his concerns about incontinence and I have a fear of this as well to the point where I have often thought I would rather be dead than suffer that indignity.

But let me put the other point of view. The first is to recognise that forums such as these, helpful and supportive though they are, might often give a slightly skewed view of how likely any set of given side effects are. The analogy I often make is with forums about certain makes of car - people will generally only seek advice if something has gone badly wrong. It would be unusual for somebody to say "I've had treatment for prostate cancer and, you know what, it was an absolute breeze."

My best example is my older brother who was diagnosed 3 years ago. He put off going for a PSA test, despite having symptoms, for quite a long time because he felt he simply could not face treatment and, in particular, the side effects. Well my sister in law eventually hauled him off to the GP - he was diagnosed with a Gleason 9 cancer - aggressive but, mercifully, contained within the prostate capsule. He has had 20 months hormone treatment, High Dose Rate Temporary brachytherapy topped up with 15 sessions of External Beam Radiotherapy. He is now in excellent health and his last PSA test was in the undetectable range. He had side effects but only in line with what is normal and has come through the whole process very well indeed. You would probably not read about a case like my brother because his treatment was normal. He had some breast tenderness from the HT, a bit of bowel urgency and a bit of difficulty peeing after the brachytherapy. All were successfully dealt with by tweaks to diet and some medication and all have gone now.

So my message would be - don't take any hard and fast decisions - have a good think and read the excellent toolkit that this charity provides.

All the very best to you and your husband.

Pete

User
Posted 14 Feb 2016 at 15:15
Hi Mirellen,

At the moment I would assume your other half will be processing the news. I remember going to see the oncologist for my results still thinking I would be told it would be something other than cancer. Even though I had prepared myself for bad news it was still a heart stopping moment. Life is a little on hold from that moment until the MRI and bone scan were done. It is only then that a clearer clinical picture can be reported and the treatment options explained. With that in mind the receptionist is being a bit previous and without wanting to sound too blunt it isn't her job to decide on treatment. And the reality is that any health professional should only define the clinical picture and what treatment will be suitable.The decision lies solely with your partner. No one can drag him kicking and screaming to an operating theatre or a cancer treatment centre.

It must be awful for family to hear the news. For me it was only when all the clinical picture was presented that I sat down with my good lady and talked about the options and looked at how it would affect us. She came to the meetings with the surgeons and oncologist so had as much information as me. I remember one surgeon saying it wasn't the people who choose a treatment that was a concern for him but the ones who are in denial and choose to do nothing.

At the moment the advice to read the tool kit and inform yourself of the terminology and options. It might be good to start a thread of your own so others may see your posts and offer support.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 03 Mar 2016 at 09:38
Hi Chris,

Haven't seen the Telegraph today. I'll look out for it.

I used to work for them up until the recession. Unfortunately, they made most of the people I worked with redundant and the work disappeared. Was fun though up until that time.

Steve

User
Posted 03 Mar 2016 at 13:22
Chris,

Thanks for the tip re the Telegraph. I read it at the newsstand in my local supermarket this morning !

I was fully briefed re the possible side effects mentioned . In fact I have a further blood test tomorrow for this very reason .

This follows on from Kev's ( I run ) post re poo in blood .

Can't say I'm thrilled about it at all. But it may be something or hopefully nothing. The Onco didn't rule out my problem being resultant from RT .

Keep going . I'm glad you've avoided RT for yourself.

Best wishes ,

John

User
Posted 03 Mar 2016 at 17:02

Hey Buddy

I just wanted to add my support to you my good friend, I know we are communicating offline everyday but I wanted you to know I was here to read the update.

Keep your head strong buddy, remember dinner is on me this time :)

All the best to you and all the best to everyone else on this fantastic forum...

Raiden

User
Posted 05 Mar 2016 at 17:26

Hi Chris

I've just been reading through your journey.  It might seem trivial to say, with all that's been going on in your life more recently, but a big thanks for the 'heads up' on the risks of overloading the bladder ( 11 July 2015). A timely reminder for me- been pushing the boundaries a bit there myself in a similar way. Your post was a reality check.

User
Posted 14 Apr 2016 at 10:47

Sounds like an excellent plan to me CJ - I like your onco's approach a lot.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Apr 2016 at 22:40
Hoorah for holidays that's what I say,

I hope the shed is going to be a man cave😄 It is sounding good to me CJ . So it's. Smile from me.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Sep 2016 at 13:27

So guys a big update. More to keep my record up to date rather than bore you all to death. I've had a lot of cancelled ED appts recently so I actually texted my original Uro surgeon and asked to see him privately. Low and behold two days later I got an 8.50 NHS appt. I've had great service.
My surgeon is a ' get all that cancer out and constantly fight it ' kind of guy. My Onco understands my mental fragility and caters around that.
As for my cancer he was upset I didn't do the RT. For the first time we had a full post Surgery review of Histology. Some seminal vesicle left behind but only to protect the nerves. However I did have a positive margin at the bladder area so I am highly likely with a G9T4 N1 cancer to get local recurrence which will need dealing with at some point. But he agreed my post op PSA profile suggested body Mets and so he understood my reasons for turning it down at this time. He suspects when I'm next scanned with CholinePET that they will find further lymph spread ( which can be operated ) or bone spread ( which if small tumours can be RT individually ). But he feels if I go for treatments , I may as well have full prostate bed RT aswell.
As for ED we tentatively agreed I could stay on Cialis 5mg but only as it is giving me happiness. He insists still that latest research says it will not give natural recovery any more than just a pump alone. I explained recent atrophy and peyronies and laughably he said that can't be always linked to cancer and surgery. It could be ' just bad luck '. Or coincidence ? WTF haha. He wants me to take some pictures when I'm next erect , to take to the ED clinic next visit. God almighty the iCloud could send them anywhere. I'm also going to try the new super injection that gives less pain when I visit as I'd be a good candidate and may need to use it if future castration HT renders Cialis useless.
Was good to see him and El and I were happy with talk , but for now we will stick with gentle Onco and his plans.
Best wishes all x

Edited by member 07 Sep 2016 at 13:43  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 07 Sep 2016 at 19:19

Chris,

You are amazing, keep at it young man, best regards to you and El

x

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Sep 2016 at 00:00

More or less John's onco's words Chris - if there are a few small bone mets they can be zapped individually and lymph nodes can be removed surgically. The affected part of his bladder had been removed during the RP though and he has already had the salvage RT to prostate bed & bladder neck so I am thinking that perhaps you will be persuaded to have the RT if the PET scan comes back with good news?

John's PSA result tomorrow & onco next week :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Sep 2016 at 07:22
CJ

Thanks for the update it is useful to hear people's journeys and to hear how our friends are getting on. Some tough choices to be made but at least we are still here to make them and I wish you well.

I showed my consultant a picture on my phone of blood dripping out of my penis, he said "it's a good job you don't have to go to Boots to pick the photos, you would get locked up".

Take care.

Thanks Chris

User
Posted 08 Sep 2016 at 08:48

Thanks for the update Chris
You are at true fighter and the support you offer to others is appreciated,

Viv

The only time you should look back is to see how far you have come
User
Posted 08 Sep 2016 at 13:35
Hi Chris thanks for the update glad it was a positive meeting for you and E. Still looking at those websites 😊 jxx
User
Posted 11 Oct 2016 at 23:38

Hi Chris,

I know how worrying it is when PSA starts to rise, as you say '...We waiting for PSA to reach 3 to 5 to make sure we can see the suckers wherever they are grrrr...'

Thing is when I was in that position back in 2013, my PSa rose 2 to 4, in 6 months and 4 to 6 in two months, at which point I had an appointment with the Consultant's assistant, I think they call them 'housemen'.  The scheme they had in place at my hospital was that patients got to alternate, seeing the main consultant at one appointment, and his assistant at the next one.  So I was only seeing the main man once a year.  Anyway with PSA at 6 and rising rapidly the assistant 'houseman' suggested I go back on HT and I had no qualms about that.

He was also telling me at that time that because I had already had one bout of radiotherapy, there were no treatment options other than HT.  So logically there was no point in further scans, because they were not going to do anything other than HT whatever the scans might show.

Later, having done a little research myself, and identified options such as cyberknife, and having sent them a polite and detailed letter, I ended up getting referred to another hospital for salvage HDR brachytherapy.  

Then I had to have scans, indeed I had the full set of MRI/CT and Bone scans twice, not because they were so much looking for PCa, but because they were double checking that I was otherwise healthy and not about to die from something else.

They picked up interesting facts like I have arthritis, I had cysts on my kidneys, two different types of cysts on my thyroid gland etc, but none of the scans were of any use for finding the PCa as my prostate and surroundings were likened to a bombsite, they had to do template biopsies to find the actual cancer.

In the middle of all this, I actually got my 6 monthly appointment with my Consultant, he is a nice guy, I have every faith in him, but he has that habit I guess a lot of doctor's have, of looking at his notes and bringing himself up to date while you are sitting next to him.  He read through my notes, and sort of asked me 'you went back on HT when your PSA got to 6?'  When I replied yes, he said sort of talking to himself that he might have been inclined to let it go higher, he didn't say how high and I didn't ask.  

I wish I had taken that conversation further because he was implying that when the PSA starts to rise there is some minimum threshold it needs to cross, before there is any chance of seeing a tumour on a scan, and presumably in my case with an irradiated prostate that was higher than 6?

Right at this moment I am feeling very uneasy, on paper I am doing very well, my last PSA was a mere 0.2, but I can sort of sense, a gut feeling, (I almost said a feeling in my bones!) that it is on the rise, quite how high it will be prudent to let it rise to before going back on HT is something about which I am far from clear.

I suppose it is a sort of bare knuckle ride, because the higher you let PSA go without treatment, the more chances of further spread, but as you say you need it high enough to see the suckers?

I don't know if any of this helps?  But best of luck.  

:)

Dave 

Edited by member 11 Oct 2016 at 23:41  | Reason: Not specified

User
Posted 24 Nov 2016 at 14:03

Don't know what to say Chris. I don't have the knowledge to comment.

Just to let you know I've seen the post and feel for you as I know this is going to worry you.

Hopefully somebody will come along to reassure you

Best Wishes

Sandra

********

We can't control the winds - but we can adjust our sails
User
Posted 24 Nov 2016 at 14:54

Hi Chris.

Sad to read your latest update. Perhaps this is not much comfort but it could be PSA will rise to pre HT (2.4) at the same rate as now and then stay there or at least slow down somewhat. Hopefully a future PET will pick up just a single cluster that can be easily got rid of.

Good luck

Ray

User
Posted 24 Nov 2016 at 18:00
CJ

Sorry to hear your news ,I know how it feels to get PSA rises. I am attending a weekly class at a Maggie's centre, as the Urology nurse said we are coming up with new treatments all the time and we never know what tomorrow with bring.

Take care.

Thanks Chris

User
Posted 24 Nov 2016 at 18:21
Hi Chris

Sorry to hear about your latest battle. Hopefully something can be picked up in next scan and dealt with.

Sandy

User
Posted 24 Nov 2016 at 18:52
Horrid, grumbling persistent disease! Very sorry to read your update.

Henry

User
Posted 24 Nov 2016 at 19:36

Hi Chris

I'm a newbie on here but I have read a lot of your posts and you are a frequent contributor on so many issues. I'm sorry to hear about the latest results, but I'm sure you will remain positive.

Good luck

Chris

User
Posted 24 Nov 2016 at 20:52
Hi Chris,

This bl##dy disease, I loathe it with a passion. I'm sorry you are having it tough.

Thoughts are with you.

Leila

User
Posted 24 Nov 2016 at 21:07

I looked at your post and felt pleased that something is happening - this is exactly why you stopped treatment, to let the cancer grow a little so that the specialist can find it on a scan and hopefully convince you that targeted treatment is worthwhile (or not)

I am always the odd one out - sorry love - but just relieved that you are not going to be in the no-man's land for too long. The sooner you can have that scan the better, in my opinion xxx.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Nov 2016 at 21:54
Hi Chris,

I am not going to offer advice or platitudes just a helping hand through the tough times.

Keep your chin up.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Nov 2016 at 10:15
Chris,

Only just read your update... hope scan goes OK and good luck with whatever you decide on the next part of your journey.

Keep Right On...

KRO..

User
Posted 25 Nov 2016 at 11:07

Hi Chris. Just caught up with your update. Sorry to hear the road is still bumpy but keep on with the positive attitude - it can't hurt and some people believe it can seriously help. You're an inspiration with your candour and understanding of others, and you deserve the ball to bounce your way. I'm sure it will. 

User
Posted 26 Nov 2016 at 10:30

Hi Chris hope your up coming scan shows a path forward for you , enjoy xmas all the best Andy

User
Posted 29 Nov 2016 at 10:17
Hi Chris

I think you and your Onco are approaching this in the right way by allowing the PSA to rise so that you will know where to target the beam. I also have a consistent doubling time of 6 weeks when off HT so keep an eye on the figures and act accordingly. I have been kept off HT now for several months to see how my treatment works which I will know more about next week. 3 months ago it stood at 14.2 so if my treatment hasn't worked I will demand to go back on HT to reign it back in as it be way too high for comfort.

All the best

Roy

User
Posted 23 Feb 2017 at 10:59

Ranting angry
So Onco agreed I could have PSMA PET instead of Choline PET. It's the better scan. But area won't pay for it. So I agree to pay privately. But I need a referral. But my Onco won't refer as it makes him responsible for paying. So he writes to my GP and asks him to refer me. And he won't refer me as it's the Onco job apparently. And I've got £1800 and a train ticket and I can't self refer.
Found out this morning that no one has referred me for anything , even though I'm sat here with zero treatment and cancer growing inside me somewhere. All come to a grinding halt with everyone sat with their thumbs up their as****s.
I would happily pay to be in an abandoned barn with an AK-47 and 8000 China plates hung on the walls

If life gives you lemons , then make lemonade

User
Posted 23 Feb 2017 at 11:20

what a bloody fiasco.

Could you see a private GP and get him to make referral?

What about PALS or whoever senior takes hospital complaints.

Hope one of the others can point you in the right direction.

Lyn might know

We can't control the winds - but we can adjust our sails
User
Posted 23 Feb 2017 at 11:29

Chris,

  What a ridiculous situation to find yourself in through no fault of your own.

 

I know it's an extra outlay, but is it worth seeing your (or a GP) or a consultant privately on the proviso that they would refer you for that scan.

I was self-pay at the time and got referred to UCHL by my onco for my scan  and in due course I got hit by the bill for the scan direct from the hospital.

 

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 23 Feb 2017 at 12:22

That is F'ing ridiculous.

How's this for a course of action?

1. Contact Uro/Onco and say "I'll take whatever scan Area will pay for, if that's a Choline PET, then so be it, but can we get on with it quickly please?".

2. Separately, investigate how to get referred for a private PSMA PET scan by asking GP to refer you privately to a Uro/Onco who can book the scan. If GP says he can't do that, then get him to suggest how you can get so referred. Plainly, it is possible to go private Mr GP, people do it all the time, tell me how to do it.

User
Posted 01 Mar 2017 at 15:56

Hi Chris,

I have been following your journey for some time know and you must have the patience of a saint think i would have blown my top with what you have gone through, chin  up mate and good luck with the treatment.

John.

User
Posted 01 Mar 2017 at 16:00
CJ

Great news about getting the scan you want, next week I see an onco for the first time in my journey and will be discussing the PSMA test. As you said to me in another post make sure you get the right treatment.

Thanks Chris

User
Posted 01 Mar 2017 at 16:01
Good luck brother.

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 01 Mar 2017 at 16:07

Good on you Chris - a trailblazer!

E

x

User
Posted 01 Mar 2017 at 16:15
Great news - well done!!
User
Posted 01 Mar 2017 at 16:50
Great news Chris, it sometimes pays to persevere. Now it's time to see where the little bug***s are hiding.

Roy

User
Posted 01 Mar 2017 at 17:46

Chris

Nice one - fingers crossed the winning run continues.

Ray

User
Posted 01 Mar 2017 at 19:01

Great news Chris.

I'm so pleased you got it sorted

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2017 at 22:19
Brilliant news Chris that's one in the eye for when the computer says No .

You are a trailblazer fighting the system and getting what hopefully one day will be routine for all. Well done .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Mar 2017 at 01:23
Well done, Chris.

Hope everything goes well for you.

Steve

User
Posted 02 Mar 2017 at 08:08

Excellent outcome

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Mar 2017 at 13:55

Chris,

I played hockey for 40 years, I started in 1964 and finished in 2004 when my knees just wouldn't take the twisting and turning anymore. I wasn't much good at hockey, a typical 5th XI player, but I loved it. I hated having to stop playing but I quickly got over it and moved on to other things (I play croquet now).

When I was diagnosed in July 2013 with advanced PCa and was put onto HT then, as we all know, that completely buggered up the sex drive and any ability to raise a smile. It is going to sound cold and unemotional but I've taken exactly the same attitude to that as I took to having to stop playing hockey, that's over, stop regretting it and move on to other things. It works for me.

If things change for you I hope you are also able to adapt and accept. Remember, love is far more important than sex.

David

User
Posted 19 Mar 2017 at 18:45

I love a good hockey player.

CJ, one step at a time - don't even start to fret about decisions you may or may not make (or someone else might push you towards) until AFTER you have the scan results and know what you are dealing with. You are trying to second guess the outcome and it does you no good at all.

If ..... IF ... the scan shows a defined tumour or tumours, they will tell you what can be done about them. If it is a lone met it may be easy to target with a short sharp zapping. If it is a widespread scattering of hot spots, they will have a conversation with you about whether and when to reintroduce HT (and you will be the master of that decision). If the scan doesn't show anything, you will be where you are now - playing poker with your PSA and waiting for something more definite to come along. Who knows what options might be available that wouldn't knock you back so much since you have come so far.

Baby steps, my friend, baby steps.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Mar 2017 at 18:53

I've read your profile Chris and the way you have constantly picked yourself up from the depths of despair and fought back is awesome. Lyn's right. No point trying to second-guess the outcome of the scan. Whichever way it goes I'd put good money on your ability to handle it.

Will be thinking of you.

E

User
Posted 19 Mar 2017 at 19:53

One thing we have all learnt is that second guessing wastes our energies and sends us down unnecessary paths. Whatever the scan will or won't reveal will happen and then next steps will be considered.

Just get on with living for now a good month before the scan. I know it's hard but you are strong and have dealt with a lot.

User
Posted 19 Mar 2017 at 23:03
Oh Chris I totally understand your thinking and that is the problem isn't isn't it ! How do we stop our brains thinking and going into over drive! Nothing I can say will stop you being in that permantly worrying state but what I will say is while we are are worrying we forget to enjoy life and you my friend have so much to live for and so much life yet to come.

I know you are a dog lover and so this anology will ring true they have the most wonderful way of living in the moment , they don't worry about the past or the future they only have today in there minds.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Apr 2017 at 18:19

Travelled from Southampton to London yesterday £47 return. Stayed the night in hotel £75. Met relatives which was nice. Walked from Euston to Buckingham Palace in the sun which was lovely , and then received the call that my UCLH scan had been cancelled. Walked to hospital and had a mini meltdown involving manager and tissues and a full waiting room. They have reimbursed me and traveling again this Friday for scan Saturday. To be fair it was the same at Oxford. These radioactive tracers are immensely hard to produce and get the timing right etc.
I have to say I am immensely distressed after months of waiting. Very wearing mentally all this :-((

If life gives you lemons , then make lemonade

User
Posted 18 Apr 2017 at 18:30

Sorry for you but at least you had a nice walk to Buckingham.

Don't get into despair.
Lola

User
Posted 18 Apr 2017 at 18:31

Oh what a pain Chris. So sorry that you had a wasted journey - I can well imagine the stress levels.

All bits crossed that the new appointment goes to plan.

E

x

PS And congratulations on your zen determination to appreciate the relatives and the sunshine! An impressive glass half full view of a broken polystyrene beaker under the circumstances.

User
Posted 18 Apr 2017 at 18:39
I'm glad that you you had a lovely walk in the sunshine and a positive meet with your relatives but can only imagine how receiving that phone call must have felt.

Fingers crossed that everything goes well on Saturday for you. Hang in there.

Kind regards,

Kevan

User
Posted 18 Apr 2017 at 19:08

Sorry to hear that Chris.. mini melt down sounds completely like the only way to go in those circumstances.. fingers crossed for the new plan. Definitely a good week to make lemonade. Clare x

User
Posted 19 Apr 2017 at 10:57

Oh dear. But on the up side CJ, look how far you have come in the short time we have known you. A year ago, this would have been devastating and would likely have pushed you over the edge; instead, you had a wobble and then got yourself upright again.

Progress on the emotional side, if not on the nuclear scanning side :-/

Keep being strong, my friend, you are doing great x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2017 at 18:31

Chris

Frustrating, to say the least, but you're a fighter. If anything is going to get the cure/long term control it's that positive attitude you have of not giving in.

Hope all goes well Saturday.

Ray

User
Posted 21 Apr 2017 at 20:14

So happy you finally got the PET. done.
Looking forward you having good results.

Best wishes

Lola

User
Posted 25 Apr 2017 at 19:15

Info only
In true NHS style my appt was cancelled for tomorrow. Secretary wouldn't explain why. Does it ever get any easier ?? Rearranged for next Wednesday.
Obviously your mind wanders. My gut feel -- they got the scan pictures today but not the detailed report as it's too early. Also it will be the first PSMA scan my Onco has seen. Or they saw something really bad and want to throw it through an MDT meeting before they see me .........
Wine o'clock I reckon !

If life gives you lemons , then make lemonade

User
Posted 25 Apr 2017 at 19:38

Or the weather forecast is so terrible he has popped off to Marbella for a few days?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Apr 2017 at 19:48

Bloody annoying Chris.

Give Bazza's wine a try. Might as well be doing something useful while you wait eh :)

We can't control the winds - but we can adjust our sails
User
Posted 25 Apr 2017 at 19:57

Haha
I will give Bazzas wine a try, but not on my normal overnight intravenous set-up lol. I think I may want to taste this one .....

If life gives you lemons , then make lemonade

User
Posted 26 Apr 2017 at 21:18
Keep going ! Keep going

The lady in blue has had terrible flu

But she is behind you

100% per cent that's true

The scans are important , as well you know

But the sights in London are a wonderful glow

Take time to wonder ! To take it all in

There's nothing like London , to soak it all in

The rhymes are a bit naff but just wanted to say how proud I am of you .

Keep going !

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 May 2017 at 10:34

Chris,

I know how important your sexual function is to you. Is Chemo without HT an option? I'm assuming chemo and the associated steroids one has to take don't affect sexual function, this assumption would need checking. I've been on Zoladex since August 2013 so I don't know the answer to this. It's been a long time since the old boy stood to attention.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

David

Edited by member 04 May 2017 at 10:36  | Reason: Not specified

User
Posted 28 May 2017 at 12:18

Hello forum friends. Awful fortnight for El and I with mountains of emotions and a river of tears :-((
We had our second opinion on Friday with a Professor of Medicinal Oncology. We instantly warmed to him and he had thoroughly gone through my medical history before the appointment even so far as my pituitary , thyroid , bipolar complications. Luckily he is taking us under his wings as my regular Onco is moving to Leicester. We feel if anyone is ever going to cure this damn disease then he will be in on it .
His feelings , given my history and stats , are that whilst technically my only last chance of cure is RT , that it is extremely unlikely to provide that cure. Given my mental health , my fear of undertaking it , and the real concerns of bladder , bowel , ED and lymphedema , whether transient or permanent , we have decided between us to not have it. Also in consideration is that no-one would have a clue anything at all was wrong with me. I am basically fully recovered from the operation physically including sexual function , and was recovered mentally mostly until this all started up again.
So I am left with what he calls a palliative path only , but I have everything in the bag including RT if I need it. More pleasing to us was that for the time being he is happy to do nothing !! He stated he wouldn't just treat a moving PSA when the best scan available in the UK , my PSMA-PET scan , showed no cancer anywhere not even the margins.
The way forward is very regular PSA tests and when he feels comfortable another full suite of scans. He anticipated I might have one to two years of freedom which we will both enjoy to the limit ( planning two holidays already ) , followed by maybe all the tools in the bag which I will just have to face when I get there.
When asked if I would see my 60th birthday it was statistically quite unlikely, which is obviously very sad for all of us , especially having a young child.
On June 7th I will be 50 years old and on June 15th I will be exactly 2 years post op and 2 1/2 years into my journey.
Its all been very unpleasant for all of us , but by god some fun ahead I hope.
Stay safe all xx
Chris J

If life gives you lemons , then make lemonade

User
Posted 29 May 2017 at 22:23
Hi Chris,

The first thing I want to say is Statistics let's get those chucked straight out of the window they don't mean diddly . Cmon statistically if you eat an apple a day it keeps the Dr away .

Statistics only apply to those that conform to the norm if you don't fit the box then statistics don't apply it's a known fact . Statistically Trevor should not be here ! But he is .

So start planning those holidays and add in a few Saga Cruises. Just think of the places you can visit on that bus pass 🤗

You my friend have a whole bag of tools , a giant bag of lemons and lots of life to enjoy ❤️

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Aug 2017 at 16:36

Lovely to hear from you Chris with an update, albeit not a brilliant one. Still, it's probably what you expected eh and could have been a lot worse.

Yes,you have a few issues coming at you in the future but as we are always telling people on here, life with PC can change with the different treatments coming in. Hopefully, they'll be something for you then.

As usual we do our best to understand what it must be like for you with the stress and I can empathise with your desire to run away and hide, but that isn't you. You have fought it right through to this point and with your family behind you I am sure you'll give it your best shot.

Keep strong my friend. You know we are here for you

We can't control the winds - but we can adjust our sails
User
Posted 30 Aug 2017 at 22:47

Good to hear from you. Let's hope the treatment can hold off for a while so you can continue just getting on with living.

User
Posted 30 Aug 2017 at 23:12

Good on you Chris - dealing with PCa and mental health issues is a tough call. Life, love and traveling sounds like a good antidote and great that you have a supportive onco. Keep on trucking.

Ruth

x

User
Posted 31 Aug 2017 at 19:15

Hi Chris
It's been a tough call you made but sounds like it's the right one for your quality of life.
I've just recently decided to keep on with the tabs instead of going down the road of IHT.
ive not reached a point yet where the control stops and decisions on next step have to be made so I'm just plodding along doing as much as possible and keeping my mind away from the inevitable.
I don't know what else one can do
You take care and do the things you've always wanted to do.
I wonder sometimes whether one needs to be a little selfish - who knows?

Paul

User
Posted 03 Sep 2017 at 19:42

Hi Chris,

Just to say thinking of you, life, love and travelling... you continue to inspire... working too... you are a superstar of a man.

Hope you've lived and loved this weekend.

Thanks for the update

Clare

User
Posted 03 Oct 2017 at 07:18

Awww, hi Ell. It isn't easy for anyone - wives and families included - and you have more to deal with than most of us. Glad to see you posting here x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Oct 2017 at 10:36

Hello from me too Ell.

All we can offer is that listening ear and the shoulder to lean on.

Sometimes it's frustrating to read another person's posts and not to be able to physically do anything to help so it's good to know that we have been of some use. Thank you for telling us that.

Best Wishes to both of you and your family XX

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 Oct 2017 at 12:02
Follow your gut Chris. The gut is often right. When you run, look up, look ahead and never look back. You won’t escape the Demon but you will have a sense of control which always psychologically boosts QOL.

Good luck brother

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 03 Oct 2017 at 19:31

Hi Ell,

Lovely to read your post. My husband isn't a poster and doesn't even read the threads but does ask me about things that are happening on here but prefers not to look himself.

I have found it really mentally helpful to have somewhere to write and ponder and have gained much 'intelligence' from Chris' very informative posts.

With best wishes to you both

Clare

User
Posted 03 Oct 2017 at 22:34
Welcome Ell lovely to connect with you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Oct 2017 at 07:29

Hello from me ! Often read Chris's posts ,like claret my husband reads nothing ,I have to drip feed him information !
Best wishes
Debby

User
Posted 04 Oct 2017 at 21:55
Lovely to finally be able to chat with you El and yes I totally agree with everything you said this piggin disease is a clucker and that’s putting it mildly .

Chris has been so open and honest with his journey i take my hat of to Him .

BFN

Julie x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Oct 2017 at 14:36

Hugs Chris, big hugs.

I'm facebooking with my nephew and godson who is also going through a bad patch through depression and he doesn't have the cancer to contend with either.

It's a bugger innit !!

We can't control the winds - but we can adjust our sails
User
Posted 05 Oct 2017 at 22:09

Chris and Ell, you are both amazing and I have appreciated all the advice Chris has thrown my way over the last year.
You are so right about needing to talk. Something me and my OH are not managing much of at the moment but I will keep trying.

User
Posted 08 Dec 2017 at 14:53

Great news Chris, long may it continue

Arthur

User
Posted 08 Dec 2017 at 15:57

Good news for you both! 

Enjoy the festive season...

I'm having a few tonight also Chris...

I'll raise a glass .....or two.....or three.......or more.... to your continuing fight against this disease.

Best wishes

Luther

User
Posted 08 Dec 2017 at 16:04

After the terrible news on this forum over the last month this is just what we needed to hear.

Enjoy mate

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Dec 2017 at 16:18
Fantastic stuff Chris, I will be having a few too and will raise a glass to you.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 08 Dec 2017 at 16:52

I haven't post for a while but been aware of what happening here.
So glad to hear the news, Chris.
Enjoy Xmas time, you have a god reason now ;).

xx

Lola.

User
Posted 08 Dec 2017 at 17:59
Fantastic news Chris . Deck the Halls and Party that’s what I say.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Dec 2017 at 18:06
CJ

Great news, so pleased for you all.

Thanks Chris

User
Posted 08 Dec 2017 at 18:26
Great, Chris. Nothing like a decent doctor who is treating you, not the disease!
User
Posted 08 Dec 2017 at 18:53
What a lovely piece of news to read.

I am so pleased for you both as I know from following your posts what a roller coaster you ride.

Thanks for sharing.

User
Posted 08 Dec 2017 at 21:06
Best wishes to you and wife ,enjoy xmas and new year .

Debby

User
Posted 08 Dec 2017 at 22:34
Great news chris, enjoy a lovely christmas with your loved ones,ive learnt so much from your posts, you and others give so much to us who are at the start of this journey, its helped so much getting advice from real people, it means so much, i dont think you all even realise how selfless you are sharing your journeys to try and help others and to try and put things into perspective for new members, my oh booked for high dose brachy 29th december then 15th january radiotherapy to pelvic lymphs and prostate so at least we get xmas, hes been on zoladex 3months so far not many side effects apart from the e.d and lost libido..once again thank you..jo.x
User
Posted 08 Dec 2017 at 22:41

Fabulous news Chris, great to hear this.. have fantastic Christmas, it sounds like you have struck gold with your consultant.
Clare x

User
Posted 09 Dec 2017 at 10:32
Brilliant news, what a relief, and what a time to get some good news too Chris 👍
User
Posted 09 Dec 2017 at 10:41

Great news Chris, don't post very often but read your posts, have a fab christmas.

User
Posted 09 Dec 2017 at 11:13

Hi Chris

I agree with HenryA on the good news and finding a doctor who treats the person rather than just whatever illness is good find.

Good luck

Ray

User
Posted 09 Dec 2017 at 11:39

Brilliant news Chris. Have a great Christmas with your family

Bri

User
Posted 09 Dec 2017 at 20:44

It all sounds good to me.
Have a great Christmas and New Year.

All the best

Paul

User
Posted 12 Dec 2017 at 07:17

Good News Chris .

Merry Christmas and all the Best for The New Year .

 

Kevin .

User
Posted 12 Dec 2017 at 13:06

Well done, Chris.

Now enjoy Xmas plus my heartfelt good wishes to you and your family for 2019.

David

User
Posted 12 Dec 2017 at 16:13

Great news

 

Ulsterman

User
Posted 12 Dec 2017 at 16:39

Your onco sounds great Chris. Enjoy the freedom from treatment, have a great Christmas with those you love.

Sending best wishes, Ian.

Ido4

User
Posted 12 Dec 2017 at 19:48

Ahh, that's a great update xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Dec 2017 at 10:32
Good to read such an upbeat update. Don't apologise! Best wishes to you both.
User
Posted 14 Dec 2017 at 22:15
What a fantastic post! Merry Christmas xxx
User
Posted 18 Dec 2017 at 19:10

What a greT attitude you have. Really inspired me tonight. Merry Christmas x

User
Posted 23 Mar 2018 at 15:56

BRILLIANT!!!

User
Posted 23 Mar 2018 at 15:57

Great news Chris so pleased for you

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Mar 2018 at 16:14

Great Chris,

Keep enjoying life.  Enjoy your steak!

Steve

User
Posted 23 Mar 2018 at 16:55

Only ONE bottle?

You're slipping young man.

Well done. Enjoy the steak, the wine, your life and more importantly,your lovely supportive family.

We can't control the winds - but we can adjust our sails
User
Posted 23 Mar 2018 at 17:24
Just got back from a school trip so first job was to see if there was any news from you and what great news it is. Brilliant - glad it's now behind you and you are moving on.
User
Posted 23 Mar 2018 at 18:17

Great news ,ching ching !!
Debby

User
Posted 23 Mar 2018 at 18:21
CJ

Great news Chris, I will raise a glass tonight to celebrate.

Thanks Chris

User
Posted 23 Mar 2018 at 18:37
Fantastic news Chris. Enjoy.

All the best

Roy

User
Posted 23 Mar 2018 at 19:17

Fantastic news Chris. I'm very pleased for you. enjoy

Paul

User
Posted 23 Mar 2018 at 20:47

Fab...great news Chris.

So pleased for you

Clare

User
Posted 23 Mar 2018 at 21:08

Enjoy your celebrations and many more to come.

Ray

User
Posted 23 Mar 2018 at 21:19

How weird is that! What is the onco’s theory? I hope you have both had a lovely evening, especially El for having to put up with all the Lego and angst x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Mar 2018 at 21:49

Top News Chris!!

Saludos and enjoy! :-))

User
Posted 23 Mar 2018 at 21:50

splendid news Chris, so pleased for you all..

have a lovely weekend.

enjoy the rioja, I'll have a bottle of malbec in your honour.

rib eye? excellent choice of cut.

:-)

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 24 Mar 2018 at 16:48

Originally Posted by: Online Community Member


Tired now but no changes in urinary/bowel/sexual function so far but I think those come further down the line?

 

Some men don't experience any of these or only experience them many years later. John is nearly 6 years post SRT and no sign of any problems yet. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jun 2018 at 20:18

I wish you the best, Chris. I see how hard this journey is being to you, but keep calm. 

Fingers crossed

Take care,

 

Lola.

 

User
Posted 24 Jun 2018 at 20:29

CJ

Fingers crossed for all your results this week. 

Thanks Chris

User
Posted 24 Jun 2018 at 20:51

Rooting for you Chris because you contribute and add so much to this forum, always selflessly offering advice and comfort to others.

Fingers crossed.

David

User
Posted 24 Jun 2018 at 21:42
Chris

Good luck on results.

Ray

User
Posted 24 Jun 2018 at 21:57

Fingers crossed for you Chris. 

Ian

Ido4

User
Posted 24 Jun 2018 at 22:17
Best wishes for you Chris.

Arthur

User
Posted 24 Jun 2018 at 23:19
good luck Chris your life first attitude is an inspiration.

Push them about your enlarged gland somewhere else (can't remember where!) and if that is impacting anything

User
Posted 25 Jun 2018 at 04:22

Good Luck with the results, Chris.  Hope they are good for you.

Steve

User
Posted 25 Jun 2018 at 08:36

Good luck Chris, keep ducking and diving!

Flexi

User
Posted 25 Jun 2018 at 14:00

Chris
It's Good that your psa results are better than expected.

I truly hope that your onco appointment goes well for you.

All the best

Paul

ive just had a lovely chilled bio limonade.

Edited by member 25 Jun 2018 at 14:04  | Reason: Not specified

User
Posted 25 Jun 2018 at 19:59
Good luck on Friday, Chris.
User
Posted 26 Jun 2018 at 22:46
Good luck with the appt Chris

Bri

User
Posted 26 Jun 2018 at 22:59
Hope meeting with Onco gives encouragement.
Barry
User
Posted 28 Jun 2018 at 17:17

Good luck for tomorrow Chris.

Roy

User
Posted 28 Jun 2018 at 19:09
All the very best wishes for tomorrow from me Chris

Cheers

Bill

User
Posted 29 Jun 2018 at 16:57
Chris

It seems about the best results you could realistically have hoped for. I totally understand your conviction in sticking to your QOL first philosophy and admire you for it. Thanks for sharing your journey and previous advice and opinions.

I hope you enjoy the next six months, get good results again, enjoy the next six months, get good results, enjoy the next six months, etc. etc. You know what Im saying.

All the best of luck to you

Cheers

Bill

User
Posted 29 Jun 2018 at 17:33

HI Chris

Good to see that the results were better than you anticipated and that you now have a six month 'break'. 

I hope that you will just enjoy the nice weather and be able to put the PCa on the back burner for a few months so that you get to enjoy the QOL that all your efforts are aimed at.

All the best

Kevan 

User
Posted 29 Jun 2018 at 18:30
Chris

You're doing very well of making the best of life you can from current circumstances. Perhaps it's too much to ask Father Christmas will present you with an equally good set of results and more - but you never know.

Good luck going forward

Ray

User
Posted 29 Jun 2018 at 20:28

Your choice, Chris and your take on an illness that is out to get us. Whatever, I wish you all the best and hope that your strength of character will give you every chance to combat the illness in the future. As you say, let’s all relax and just enjoy the wonderful weather we’re all experiencing at this time.

User
Posted 29 Jun 2018 at 23:45

Good choice Chris, you are inspiational as ever..  

User
Posted 03 Jul 2018 at 09:12
Enjoy the summer Chris take care Andy
User
Posted 03 Jul 2018 at 19:10
You are doing well Chris,

A decision not to do something is still a brave decision.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Jan 2019 at 13:39

CJ

Hope you get some positive answers and a plan at tomorrow's meeting with your onco.

Best wishes.

 Thanks Chris

User
Posted 09 Jan 2019 at 14:38

Hi Chris , I also send my best wishes to you and hope you can find a way to deal mentally with all the decisions you have to make , either now or at some time in the future. God i have my fingers crossed for you every time you have a test.

Its funny but you have given me some good advice over the past year on my journey and some of that was , i think , not to overthink the future smile was that you ?

None of us has it easy but being a bit of a pioneer on your chosen route must have been very difficult.

You are an amazing individual and i respect your knowledge and decisions immensely . Not forgetting your obviously supportive family. Keep up the good work and know that we are all behind you whatever decisions you decide to make.

By the way if i had a choice i wouldn't have the shitty HT either. My brain is mush and is hurting from all the stuff going on inside. i have 10 months left ( i hope) and i am counting down the days .....

Phil

User
Posted 09 Jan 2019 at 14:48

Originally Posted by: Online Community Member
Given consistent doubling time it should have been 150 ish. They won’t prescribe HT until there is visual evidence of distant spread. However I am T4 as had 5 lymph nodes cancerous at surgery. I’ve had every scan going. Sadly I’m terrified of HT and what it does to a man. I’ve returned to full function in all ways post surgery, and shallow though it may be , I don’t want to become a monk mate. My mental issues wouldn’t be able to cope I’m quite sure. But who knows ? I’ll decide then

HT side-effects seem to vary drastically from person to person, Chris. I've been lucky and had almost no significant side-effects from bicalutimide (other than the suppression of libido one would expect), but there again, I'm a single man and sex doesn't play a big part (well, any part, if I'm honest smile ) in my life. I completely understand that for many men it is an important part of life. You need to make the decisions that are right for you, which clearly you have done, and I respect you for doing that.

All the best,

Chris

 

 

User
Posted 09 Jan 2019 at 20:24
Everything crossed that the scans are good Chris and you have another 6 months focussed on QoL

Bri

User
Posted 10 Jan 2019 at 15:22

CJ

Just going to say best wishes and keep going mate.

Thanks Chris

User
Posted 01 Feb 2019 at 13:37

Hi Chris, i really hope you get some good news mate, you deserve it.

Will be thinking of you.

I am running Tough Mudder in May to raise some more funds to help us defeat this shitty disease. I have a lot of support and there are 10 in my team. I think they all understand more about PCa now than before I was diagnosed.

Fingers crossed for you, you are one of my hero’s on here.

Phil

User
Posted 01 Feb 2019 at 14:20

Good luck next Wednesday, Chris - will be thinking of you. Your spirit and strength of character has been an inspiration to us all and long may it continue.

David

User
Posted 04 Feb 2019 at 07:39

What a wonderfuk poem, Irun

 

Regards

 

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 Feb 2019 at 08:12
Thinking of you ,hope all goes well on Wednesday .

Thankyou Irun for the poem .

Best wishes

Debby

User
Posted 04 Feb 2019 at 12:57
Chris you are a very inspirational man, so helpful and encouraging. We are newbies on here but have read your posts extensively and feel like we know you. Sending good thoughts your way.
User
Posted 17 Feb 2019 at 23:17
evening Chris,

after all that you have been through, you are still going strong. thank the GL.

if you fancy meeting up for a beer in that Soton you live in, shout mate?

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 30 Aug 2019 at 11:45

Hi Chris

My theory as regards the doubling time is that when we treat the cancer in the hope of eliminating it, we may kill some of the less mature cells but the remainder mutate and become more agressive and shortening the doubling time as happened to me after Chemo which I now regret, as my quality of life now is not the best, and my doubling time has reduced from 2-3 months then to less than a month now. I admire the way you are approaching this but I would probably want a scan earlier as there maybe something showing up that can be eliminated via a curative process rather than trying to suppress it. By not treating via chemo and HT the cancer has not being threatened and therefore not mutating into a more agressive form. This is only my personal opinion though. Enjoy your holiday and keep us informed.

All the best

Roy

User
Posted 30 Aug 2019 at 14:21

CJ

Have a great time. Thanks Chris

User
Posted 30 Aug 2019 at 23:08

Enjoy the cruise Chris.

 

Ido4

User
Posted 30 Aug 2019 at 23:24
Probably all that lego you lug around!

Enjoy the cruise, my friend :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 06:55
Still admiring your approach Chris. Hope the cruise helps with the fatigue etc. Enjoy.

All the best

Cheers

Bill

User
Posted 04 Sep 2019 at 16:42

Hi Chris, just go and enjoy yourself as much as you can. No one can tell you what to do , only you know your feelings, your body and your relationship with your family.

I’ve been on here saying how few side affects I have on Prostap but after my last one in October I am determined to never go back on it whatever happens. It has completely decimated my mind and I so badly want to get get back to some kind of normality. I know my issues are historical from childhood but I understand you suffer with the mental side of things too and I wonder if HT would also cause problems for you, or maybe not, no one will know till you have to try it.

I suppose all I’m saying is if you & your family are happy with your decisions then don’t have any regrets.

Hope you have a fantastic time.

 

User
Posted 08 Oct 2019 at 13:02

I sat reflecting last night at my situation and the loss of a few members recently. It sank in that a fair few of the members who had been on here a couple of years before me , are now gone or very poorly. And I’m 4 1/2 yrs into this journey G9T4N1MX.
All I’ve had is RP and a small stint of Bicalutamide and at present on zero treatment with psa 190.
All this journey I have been symptom-free. In fact if anything the problems I have all started post surgery. Anyway scans at the end of this month and I’m convinced they must find something surely now ??? I have chronic lower back pain and full length leg pain in each leg. I guess in a way I’ve been ( lucky ) to get this far with very little intervention and that has made me quite nonchalant about it all , but I know a nasty surprise is just around the corner and I intend to fight it all the way.
Best wishes to us all !!

Edited by member 09 Oct 2019 at 10:00  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 08 Oct 2019 at 14:56

Hi Chris, I wish you the best for your upcoming scans. I get the feeling you’d like to know the reasons for the back and leg pains ?

I hope you can stay off the HT for as long as possible as I know how much it can mess with your mind especially with pre-existing issues I.e. Bi-Polar.

Its funny I almost feel like one of the oldies now....started my journey in July ‘17 with a final diagnosis in December of that year.

My final HT injection on the 18th of this month and then the difficult wait to see if the treatment has worked and also that all the bits start working as they did before 😆😆.

So again best of luck for the scans. It’s a very brave path you tread .

Phil

User
Posted 08 Oct 2019 at 15:26
Hi Chris,

Sorry to hear that you are concerned about the latest tests. It's understandable anxiety especially in light of the sad losses recently of men who have been here for a while now.

I hope that there isn't a nasty surprise around the corner, and you have nothing to fear or face. But, you continue to be an inspiration and a constant source of support and encouragement to many others.

Good luck to you and my best wishes to your family.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Oct 2019 at 20:15

Hi Chris ,

i changed my avatar back just for you 😉. 

So scores on the doors aren’t brilliant but your journey so far has been so different from the norm.  You have all of the tools left in the bag . You have got this .

Good luck with scans .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Nov 2019 at 08:55

Am attempting to find a positive response to you, but with my limited knowledge of this illness I am finding it very difficult. Your faith in your Oncologist is well known and is to be applauded, but it is your strength of character that has served you so well so far on your difficult journey. I feel sure that with the help of your family you will continue to fight this nasty illness all the way and that whatever decision(s) you make in the future it will be what’s best for you. It’s so easy for me to say it, but please Stay Strong, Chris.

User
Posted 16 Nov 2019 at 14:48

I think you are wise to leave treatment till after the festivities Chris.

But in the New Year it’s time for HT plus hormone naive chemotherapy I think.

If that’s what you decide of course, I have massive respect for the way you have approached things.

 

 

Ido4

User
Posted 16 Nov 2019 at 15:33
Whatever your decision about treatment is, I wish you the very best, Chris.

Show Most Thanked Posts
User
Posted 14 May 2015 at 20:05
Chris

Here you go up to the top of the board. I will come back later and reply properly. In the meantime I hope you get some responses now.

It is a daft system as we all really want to help and encourage new members. More later xx

Mo

User
Posted 14 May 2015 at 23:29
Hi Chris

well now you are in the waiting game ... there is really no more you can do until 27th when you and El go for that consult.

All in all it sounds as though everythig is treatable and that could mean surgery, RT hormone treatment or a combination.

Unfortunately until all the results are in, biopsies confirmed etc. There is not much you can do. Have you got the toolkit from this forum ?

with regard to posting, I have sent you a reply to your PM which should help a little.

Best wishes

xx

Mo

User
Posted 15 May 2015 at 00:02

I would just like to echo what Mo has said, and say that you are in the right place for support.

We will be able to help you more once you have your diagnosis in full.

You are going through a really difficult time waiting and sadly there is no easy way of getting through it, we have all been there and it is ongoing with the routine blood tests etc so we do understand.

I wish you the best of luck with the results.

Stay as positive as you can. Easier said than done though I know.

Alison

User
Posted 15 May 2015 at 11:49

Thankyou everyone very much .
I've just been called and they have had the MDT meeting , and I now need a flexible camera to look at my bladder re the proximity of the lump . Monday !!
Its never ending it seems .

If life gives you lemons , then make lemonade

User
Posted 15 May 2015 at 18:58
Ah but Chris there is a positive, u are getting everything checked out quicky now so you should get answers and a good insight on what happens next much quicker than some do.

You sound a lot more upbeat so hopefully you and El can have a relaxing and chilling out weekend.

Mine started at 6pm with a nice glass of wine, well I did do 5k in 40 mins at the gym today followed by a 45 minute pilates class so I felt I had earned it !!

Best wishes

xx

Mo

Edited by member 15 May 2015 at 18:59  | Reason: Not specified

User
Posted 18 May 2015 at 18:49

So got hauled in early by specialist .... jumped all the queues. Explained immediately that biopsy results came back 18mm growth , Gleason 4+4 , and PSA up from 34 to 43 in 3 weeks . Touching on bladder .

His advice for me and El is immediate full prostectomy and lymph removal and hopefully save bladder . Did cystoscopy and it hurt like merry hell but said inside of bladder looked ok . Gave the option of High Intensity Radiotherapy with Bracchy implants but basically said the only way forward is surgery . SHELLSHOCK . Oh and immediate hormone treatment I pick up tomorrow .

Utterly my worse day ever not to mention cystoscopy which was prob worst experience of my life .

Adrenal gland tumours ongoing with bloods , further CT scan and 24hr urine samples .

 I think I am going to need you guys awfully in the next year or so and will pledge to share my experience to give hope or be honest to people like me who are going to need help a lot .

I don't think ive even been given chance to choose . As I said if I was on my own I think my standard of happiness would lead me down the road to no treatment . I think the only reason im doing this is for my family to be honest . Actually im realising this is a forum for hope and treatment , and not for doom-and-gloom so ill be quiet .

We are shattered , and my survival instinct is not there. Two weeks of being "normal" . WTF !

Im only 47  :-((       48 in June

Chris

If life gives you lemons , then make lemonade

User
Posted 18 May 2015 at 18:53

So got hauled in early by specialist .... jumped all the queues. Explained immediately that biopsy results came back 18mm growth , Gleason 4+4 , and PSA up from 34 to 43 in 3 weeks . Touching on bladder .

His advice for me and El is immediate full prostectomy and lymph removal and hopefully save bladder . Did cystoscopy and it hurt like merry hell but said inside of bladder looked ok . Gave the option of High Intensity Radiotherapy with Bracchy implants but basically said the only way forward is surgery . SHELLSHOCK . Oh and immediate hormone treatment I pick up tomorrow .

Utterly my worse day ever not to mention cystoscopy which was prob worst experience of my life .

Adrenal gland tumours ongoing with bloods , further CT scan and 24hr urine samples .

 I think I am going to need you guys awfully in the next year or so and will pledge to share my experience to give hope or be honest to people like me who are going to need help a lot .

I don't think ive even been given chance to choose . As I said if I was on my own I think my standard of happiness would lead me down the road to no treatment . I think the only reason im doing this is for my family to be honest . Actually im realising this is a forum for hope and treatment , and not for doom-and-gloom so ill be quiet .

We are shattered , and my survival instinct is not there. Two weeks of being "normal" . WTF !

Im only 47  :-((       48 in June

Chris

If life gives you lemons , then make lemonade

User
Posted 18 May 2015 at 19:10
Hi Chris,

Sorry to hear your news, we are new to it all too my Husband is 46 psa 3.5 Gleason 6 8mm tumour on one side. He has decided to have Da Vinci op which us now set for 9th July. We were walking around in a daze for a while but now after doing some research my husband now feels more ready for the next step. All I can say is to read everything you can and make your decision on either surgery or Brachytherapy, my husband chose surgery because he has poor urine flow so would have had to have a TURP first and then 6 months later Brachytherapy so didn't want to prolong things. You wiĺl get a lot if support on this forum for everything.

Good luck to you and your family,

Trish

User
Posted 18 May 2015 at 19:53

I wish you both so much luck and best wishes . Its like shellshock isn't it although tbh I was kind of expecting it . My surgeon assures me he can do this keyhole and try to save nerves , and even re-section bladder and even re-construct a bladder using bowel tissue if needs be . But I like the idea of robot da-vinci . It wasn't offered . Then again I don't like gadgets in cars haha . I just hope he aint in a rush or had an argument with his wife that day . So I prob will be in a month before you . I think the only way forward is surgery . I either want to beat it or don't , but feel rail-roaded . Ill do the right thing !

Thankyou for your reply Trish. Really. I want help , and will give it . This site is important as this disease is life-changing and distressing to a man to the extreme .x

If life gives you lemons , then make lemonade

User
Posted 18 May 2015 at 20:30
Hi Chris,

Will keep an eye out for your posts, one tip I've been told lots of pelvic floor exercises might help reduce incontinence after so start doing them now!

Trish

User
Posted 18 May 2015 at 20:33
Chris

you and I have had several PMs over the last week, your results are not the best I agree but they are most definitely not the worst. You say you have not really been given a choice, that is because your specialist wants you to go down the surgery route and he thinks that is the best option. Now that could be just because he is a surgeon and not an Oncologist who would probably advise you to have Brachy or RT.

It is a crappy thing to have to choose on. Your surgeon may not have offered da vinci because he cannot, you may need to go to another health area to get that but it is your right to choose.

Most men I see post on here in a similar situation to you say "I want it out and I want it done quickly" I know you feel you are doing this for your family but that is your BP talking not you. I really believe that once you have had surgery and hopefully have given the big C a whopping great reverse V sign that will help you not hinder you in dealing with your BP.

WE are all here for you as long as you need us .. try checking in with some of the other guys who have had the surgery either Robotic or by a mere human being (keyhole or open)

In the meantime if El wants to post or chat with others here do encourage her to, she can use her own profile or do like a lot of others do and just share yours.

Best wishes

xx

Mo

Edited by member 19 May 2015 at 08:54  | Reason: Not specified

User
Posted 18 May 2015 at 21:15

Thank you both xx Will start those exercises with my cheese and bics !

If life gives you lemons , then make lemonade

User
Posted 18 May 2015 at 22:39
Sorry to hear that it is PCa, and not the lesser alternatives mentioned.

Now you know - you can get stuck into doing something about it, which is far better than not knowing.

You are young and it is not fair, I was 38 when my OH was diagnosed although he is a bit older than me!

All I can advise is to research the options and speak to a urologist and an oncologist if you can, to view all aspects and options.

You are at a really difficult point, not knowing quite what to do, we have all been there in that state of disbelief, shock and being so frightened.

As Mo said, you have caught it now and can do something about it. Take strength from that if you can.

Alison

User
Posted 21 May 2015 at 16:06

Arghhhh
Please any help - I know you can only do your best . I promise to help others and share my journey ! This bloody disease.
The cystoscopy showed no bladder penetration , so because of this I was actually given the chance of Oncology . Lovely specialist and he swore he could get same outcome with HDR Bracchy and 3 years Hormone Therapy . They both say that 10 year survival is 70%.
I DESPERATELY want to preserve sexual function being only 47 , and Oncology said Bracchy was the way to go. But Urology said surgery was the way to go . Ive spoken to all Prostate nurses and two on this website and they all awfully lovely and helpful , but basically non-committal .
At least im positive ( Elaine said she would kill me anyway if I didn't have treatment ). But really what to do regarding long-term side-effects of incontinence and impotence .

They said I had upto 18 mnths to live , PSA 43 and rising 5 points per week . Gleason 4+4 and 18mm touching bladder which is rare ?? We have a week to decide . Ive started hormone treatment anyway to stop it while we choose .
I will SCOUR this site in that time if it stops bombing out .

ANY ANY comments well received
Thanks Chris

If life gives you lemons , then make lemonade

User
Posted 21 May 2015 at 18:17
Chris and El

I posted a little reply on MLJS thread as well but here is what I think for what it is worth.

You have a whole week ahead of you so time to research, ask anything you need to here and of your medical team and try to make an organised approach to the decision making.

First of all what are your priorities and in what order. ..Living, EF ,continence etc.

Surgery may have several options in itself Robotic guided by a surgeon, laparascopic or open by a surgeon.

Brachy has things to consider like how the seeds might affect El or small children..here I know very little so can't offer any info. Others will though I am sure.

Surgery, Brachy, RT all offer a "cure" solution if there is such a true word I prefer to use long term remission.

They all have possible side effects and nobody can give you guarantees on any of them.

You can only make a decision based on what you know amd once you have you need to have faith in it and not look back.

I really hope you get lots of responses to this post.

Best wishes

Xx

Mo

Edited by member 21 May 2015 at 20:01  | Reason: Not specified

User
Posted 21 May 2015 at 18:36

Mo ,
I hope I get some replies too , but I guess searching the site is the best bet . At least I really am in the right mindset now . You've helped enormously but as you say it has to be our decision in the end -- just such a massive one with nasty bits anyway . The surgeon is excellent according to this site's nurses . He was going to do lapro but by hand . The Oncologist was lovely and gave us 50 minutes . Bless the NHS - ive had nothing but sheer quality and commitment by lovely professional people . He swears my standard of life will be better with him , but THREE years of tiredness ?? The surgeon feels I am young enough to "easily" get thru the side-effects . Here we go then x

Chris

If life gives you lemons , then make lemonade

User
Posted 21 May 2015 at 21:06
Chris

Sorry for the delay in getting back to you, I have a temperamental wifi connection at the moment.

I really do understand the difficulty that you find yourself in regarding making a choice as Steve was given 3 to choose from, He said that he wished there had only been 1 option then the decision would have been made for him. Although it has to be your personal choice I will list below the things Steve took into consideration when making his choice:

He's 57 years old, young according to both oncologist and urologist!

He's not got, and never has had, any urological problems.

He's a healthy weight and fit, not quite a gym bunny but he goes regularly.

He's self employed, so if he's not working he's not earning.

He's a London taxi driver so he doesn't always have easy access to a toilet.

We've been married for 29 years, together 32 and have a 17 year old daughter- our family is complete and our daughter old enough to understand what's going on.

He's rarely in the company of young children but 2 of his nieces are pregnant so he will have to give them a wide berth when he's radioactive.

Order of priorities: life expectancy, continence and ED. ED is the only thing that I commented on as Steve was worried about how it would affect me. I told him that I would happily settle for a kiss and a cuddle and know that he was in remission, I married for love not sex.

Depression: he had this following his heart attack 5 years ago as he couldn't work for 18 months, he's terrified of it coming back if he ends up being off of work long term again.

I realise that you are younger than Steve and your priorities maybe different but please make a list of the pros and cons for each treatment. Both his oncologist and urologist said that they will always promote their own specialisms if they are appropriate but they would also steer patients to each other if it was more appropriate, it's not a numbers game!

I hope that you and El don't have too many sleepless nights, if I / Steve can be of any further help please shout!

With all very best wishes

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 21 May 2015 at 21:49

Thank you Maureen so so much for taking the time to reply . Yes its very much personal choice isn't it , and ive realised I didn't read your original post quite correctly in the first place ! If I take the HT / BT route , then mine and Steves treatments are still different based on me being 3 yrs HT , but seed implant and then only 15 RT days . I think they DO try to tailor their treatments to your own specific goals . I think they have taken notice of what is important to myself and my family . But yes they still both promote their specialities , but yes it seems they are talking to each other fully . MDT tomorrow them we meet surgeon again Weds , then we make a decision as it seems a nasty aggressive badboy .
I liked your words on relationship and marriage , and Steve seems a very lucky guy indeed . We have known each other 15 years but only together 6 , but produced a little man of 5 ! I have been assured El's full support and commitment to this , and she too will accept the outcome and we can move forward together . Im leaning to the HT / Brachhy / RT route at the mo , but will await Weds.
Thanks Chris

If life gives you lemons , then make lemonade

User
Posted 21 May 2015 at 23:23
Chris

You and El will be fine, just as Steve and me are now. The initial panic has subsided, normality has been restored (as much as possible) and we're moving on with our lives again!

Gather your thoughts and questions for Wednesday and don't sign on the dotted line until you are 100% certain that all of your questions / concerns have been answered.

Stay in touch

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 21 May 2015 at 23:37

I opted for surgery with the I want it out asap attitude. No regrets, but touch wood, I have been told the cancer was contained, and at my review 11 months post op, PSA was undetectable. However, in your position, I might have looked at other options in more detail, and would urge you to do so.

Paul

Stay Calm And Carry On.
User
Posted 23 May 2015 at 17:37

On a lighter note , can 4 days of Bicalutromide knock you flat on your back for 3 hrs , or was it 3 pints of St Miguel sat in the beautiful New Forest sunshine , after nearly the worst week of my entire life ?

Absolutely torn with what to do us both ( Chris and El ). We now 60/40  non-surgery / surgery .

Kind of wish I didn't have the choice anymore . It is Sooooooo tough. Enjoy bank holiday everyone

Chri J

If life gives you lemons , then make lemonade

User
Posted 23 May 2015 at 18:28

Hello Chris and Elaine.
Just to say thinking of you really and hoping you can get some relaxing done over this Bank Holiday weekend.

Tough decisions to make, especially when you are so young.

Make your list of questions then place them in order of importance to you, rather than a random list. That way you get the ones really relevant to you answered first.
If you don't do it in order of importance you may get distracted by answers to a lesser question and get sidetracked.

Let the consultant see you have a list, he won't be phased by it, it's perfectly normal. You have a massive decision to make and he'll understand that you need the reassurance of your list.

My husband was more fortunate than you and was able to opt for low dose seed Brachytherapy and that is the only form I know about.
If your oncologist assures you that he can preserve your sexual function and it is important to you then you have to take it into consideration.
For what it's worth, and I do appreciate that it was a different Brachy, my soon to be 75 year old had this in June last year and is coming up to his first anniversary.

He didn't have youth on his side as far as sexual function was concerned but even he, at 75, can still get stirrings that are usable. With Sildenafil it makes it more than possible.

Whatever you decide both you and Elaine are in it together. She loves you enough to want to kill you if you don't take the treatment. Now that's love !!
You will need to stand strong with each other over the next few years.
There will be times for both of you when it becomes very difficult but remember that between you there is "a little man" who needs you both.

We are here for both of you. It's what we are good at.

Any questions, no matter how personal, there will be somebody who has experienced what you are asking. If you feel you want a more personal answer then click on the name under an avatar and you should be able to message that person directly.

Good Luck, and best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 May 2015 at 18:36

Hi Chris and El,

Meds and beer may take it out of you, but stress is also known to make one very tired and prone to sleeping. And you are probably stressed at the moment, handling it as you normally do, but still feeling it.

So, choosing the best of the bad?

FWIW, and I am no medical expert and thankfully I have very limited experienced and knowledge of PCa unlike many here, so I am lucky, so far, no one can really say what is the best treatment. If they could then all the others would be unemployed.

As I understand it the earlier you get diagnosed and the fewer symptoms you have the better your chance of recovery, or continued long term remission?

The specialist will all promote their specialism, in my experience. If you base your decision on what you read from members here bear in mind that you are only reading a fraction of all those men who have been where you are now, where we all have been not so long ago. Also bear in mind that with few exceptions mainly those with issues will be prominent here. I suspect that the majority of men fade away quietly and get on with their recovery? Lucky things.

Which ever choice you make, bar in ind that the range of side effects listed are just that "a range". And there may be other side effects, you may be the one in a million that cops it, or you may be the mango the many who make a full and complete and marvellous recovery. Sorry if this sounds confusing or grim, but the more you know about the after math, the better for you to be able to choose wisely.

When you go for your final meetings before deciding perhaps you would ask what other treatments may be available if needed later, back up treatment? Find out if any treatment option is off the table after your initial choice has been completed.

Take a notebook and a pen with you and someone to write and listen for you, you will be surprised what you will forget when something is said, especially if it is serious, the next few words tend to get lost in a fuddle of blur.

I hated being where you are now, and once I made my choice I went for it full pelt, no looking back. And try to not et worrying about tomorrow soil your enjoyment of today. That is one thing, those of us further along the journey", what a parc term, have all learned to a greater or lesser degree.

atb

dave


Do all you can to help yourself, then make the best of your time. :-)
User
Posted 23 May 2015 at 18:52

Hi Chris J

Don't know why San Miguel is not available on the NHS... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I can't help you with your choice of primary treatment, as this is for you and your wife/partner to decide after having all the facts and figures presented to you.

This is in my experience the most difficult time for someone with a diagnosis like yours..... having a choice of treatments as you describe  does have a positive side though, as it does indicate that there is a curative intent with either choice...

All I will say is that, once you have made your choice, don't look back and concentrate on road ahead...

Whichever way you decide to go there will be ups and downs.......no treatment path is without side effects to some degree..

You will find plenty of support on here to help you through your journey if you need it..

Best Wishes

Luther

User
Posted 23 May 2015 at 19:29

Damn it Sandra you started the tears up again -- and I actually thought they had completely dried up .
Very kind words and thanks Dave and Luther for taking the time for me.
It really doesn't help that ive suffered depression for 23 years and am bi-polar . My self -esteem is critically low at the best of times, and I find the things in life that bring people pleasure so hard to do . So yes its going to be maybe even harder because of my stupid head. And my poor poor wife having to put up with this aswell. Im not so sure we are strong enough for the times ahead , but have been advised that actually we are .
Wish hubby a happy birthday and first anniversary Sandra . My birthday is 7th June . I'll be 48 . it will be tinged im sure .

If life gives you lemons , then make lemonade

User
Posted 23 May 2015 at 20:03
Hi chris

All the best with which ever way you chose to go.

Cant offer much advise as am still waiting to find out my own options

But you have a wife who is supporting you all the way where would be without them

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 23 May 2015 at 20:06

My husband's Brachy anniversary is 3rd June.
It would appear from his latest PSA that the treatment is/has worked.
He will be checked for the next 5 years which he says will do him as it makes him getting on for 80!
We shall certainly be celebrating with a glass or two of wine. ! I might even buy him a good bottle of red instead of expecting him to drink my home made white. Now there's love for you!

As for your "Stupid Head" and your "Poor Wife" well you are very attached to both and I'm very sure that if she is prepared to kill you if you don't accept treatment then she is well able to cope with the future, even if she will sometimes feel like kicking you too at times.

You are aware that you have mental health issues and that may make it difficult for you. Make yourself (and your wife) a promise that you will always take whatever medication is necessary to help you along the road to recovery.

And yes, you WILL be strong enough for the times ahead because you have to be.
Take it all one step at a time and please, If or when you need help because it's all getting too much, ask for it before it gets out of hand.

Best wishes
Sandra


We can't control the winds - but we can adjust our sails
User
Posted 24 May 2015 at 00:27
Hi Chris

I don't have anything to add other than we're (me &Steve) thinking about you and your family, we know how difficult it is for you.

Try to enjoy the rest of the long weekend and have fun with El and your little boy.

All the best

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 24 May 2015 at 08:56
Chris

You are doing a brilliant job staying chilled enough to imbibe the San Miguel

You readily acknowledge your BP so that is a really positive thing as you will recognise when doubts and worries start to over power you. I am sure El is fantastic support too.

Take all the informative support from those posting nurture these contacts because once you have decided and started treatment you will always have us here to chat with.

In Bruges today and I don't drink beer but I will think of you when friends have one and say cheers and good luck.

Xx

Mo

User
Posted 24 May 2015 at 10:21

Hi Chris

I remember how you are feeling now and wishing someone would make the decision for me.

Has their been any consideration by your treating teams about how either treatment could impact on your MH wellbeing? Has the professional who is overseeing your care/treatment for BP been consulted?

You mentioned your surgeon said they would attempt nerve sparing which sounds positive. Perhaps get a bit more clarity on that. The specialists without a doubt will have their bias but should provide you with all the information to make a decision.

I suppose one thing you may want to consider is if you have RT/HT will you be able to cope with the not knowing straight away. With surgery at least you get an idea of how sucessful the treatment has been after six weeks.

I opted for surgery but made sure I had a very experienced surgeon. Ask your surgeon how many operations of this nature they have done. What are their sucess rates both in terms of PCa removal and minimising side effects.

Having said that I had follow up RT. But my PSA is dropping, 0.028 at last count. I am fully continent and do have some life in the nether regions.

Please feel free to read my profile.

I hope you make the decision that you are happy with

Bri

User
Posted 24 May 2015 at 11:33

Hi Brian
Thanks for your time. Had a bit of a relapse mentally last night where I was shaking "internally" . Vivid awful images involving me etc etc . I remembered that I had been in that state before . I am fully medicated up for my Bipolar and always take my pills . My Psyche is fully aware of what is going on , as ive already had some BIG wobbles . It has left me fearful of how I will cope in the near future , and which decision will be more "mentally Friendly" for me . I personally don't think I will be able to cope with what is ahead . Im not just saying that for sympathy . Ive been like this for 23 yrs .
Apparently my surgeon is the bees knees with loads of experience , and helped pioneer the robotic stuff . He said it would be laproscopic and that he could deffo spare the nerves due to the position of the tumour . Its bloody annoying as when I saw Onco I was Sooo relieved I didn't have to have surgery , but now we are slowly edging back towards it due to my estimated recovery time , and expected success etc . I am obviously shallow , as the only thing about the surgery that bothers me so much is the sexual things . Ill be honest -- im terrified of the whole shorter penis , no ejaculating , weird orgasm thing ? What the hell is that all about ? For the rest of my life .
Oncology choice just seems nicer , but then 3 years of feeling rough , and then eventual inevitable impotence and continence problems .
Felt very ill last night as I sais and that's not a good sign . Maybe some more San Miguel ?

If life gives you lemons , then make lemonade

User
Posted 24 May 2015 at 17:55

Chris
if he can nerve spare and with the right support from the ED nurse and/or your GP you have a real chance of regaining erectile function and I would say continence, but obviously there are no guarantees.

Your thoughts about sexual fuction are normal but no more ejaculation..In my experience you get used to that. Orgasm - just as good, some men say it's better. Shorter penis- slightly but "does size really matter" I will let the ladies answer that one lol.

Any questions, just ask

Bri

User
Posted 24 May 2015 at 20:41
Hello, I just thought I would say I feel for you. I don't think the worrying gets any less. Even after treatment. My other half was 57 at diagnosis, psa 3.7 (up to 4.9 by treatment time) Gleason of 6 so we were lucky it was caught early. He was never really recommended surgery, but having read all about it I think he would not have had it unless it was essential, mostly due to ED fear, incontinence fear and also as he is a farmer he can't take time off

I can understand why men "want rid" and go down that route, also as my other half chose brachytherapy there are fewer treatments available should it return. If it returns after surgery you do have radiotherapy to fall back on.

We thought brachytherapy was the easier option, but he had it beginning of Jan and has had no end of problems, radiation induced cystitis and prostatitis. I won't go into details but whatever you choose you can have problems, or complete opposite and breeze through it all. With the brachytherapy we had to keep the children off his lap too as our youngest is only 6. But it wasn't a problem in the end.

We do have a friend that had his prostate removed in his early 40's due to being young he had virtually no side effects, You do have age on your side too

I wish you all the best in choosing your treatment, it is a tough decision.

User
Posted 24 May 2015 at 22:20

Thank-you so much really really welcome advice sjtb We have been told there are zero radiation problems ( our son is 5 ). Im so sorry things haven't worked out as well as you would both have liked for your husband , but as you say I suppose some of it is just plain luck .
One thing I have noticed that just plain petrifies me , is that my PSA has hit 43 in just 1 1/2 years or less . And it rose 10 points in 2 1/2 weeks . And people on here everywhere I look are far more poorly than me ( I think ) and way further down the line , with a PSA value of 10 or less . Scaring me to be honest -- no wonder they want it out
Thanks again Chris

If life gives you lemons , then make lemonade

User
Posted 24 May 2015 at 23:42

Hi Chris,
just to be clear - whichever treatment you end up choosing, the impotence and incontinence are not inevitable. And the PSA score does not directly correlate to the severity of your disease; if it was that easy the doctors would be able to group men into treatments based on their PSA rather than waste money on all the additional tests, etc. There are men with advanced disease whose score was less than 10 and men in the 100 - 130 range with no spread. The highest recorded PSA result our uro ever came across was something like 160,000!

What I would say (based on a husband, father and father-in-law) is that it is essential you choose the treatment that gives you the best chance of getting rid, rather than opt for the treatment whose side effects seem most manageable. My husband was 50 at diagnosis and would have had brachy if it had been available but it wasn't. He opted for the op at which point they realised it was already in his bladder so he ended up having the RT/HT as well. If he had understood that the surgery might not get it all, he would have gone for RT in the first place. He is now happily chugging along towards official remission :-)

Just out of interest, did the rise from 34 - 43 come after the biopsy? It could be a bit of infection.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 May 2015 at 09:31

Originally Posted by: Online Community Member

Chris
if he can nerve spare and with the right support from the ED nurse and/or your GP you have a real chance of regaining erectile function and I would say continence, but obviously there are no guarantees.

Your thoughts about sexual fuction are normal but no more ejaculation..In my experience you get used to that. Orgasm - just as good, some men say it's better. Shorter penis- slightly but "does size really matter" I will let the ladies answer that one lol.

Any questions, just ask

Bri

 

I could not speak for all Ladies, but I would say that a considerate and skillful lover is far more important than the size of a Man's penis ! As for the lack of ejaculate again some would say what a blessing!!

Of course there are many aspects of lovemaking where neither of those matter at all so Chris,  you should be able to take those ones off your list of concerns I hope.

 

Best wishes

xx

Mo

Mo

User
Posted 25 May 2015 at 10:01

Thank-you Lyn for getting back to me, I appreciate it . And all comments the last week well taken on board and I think they are massively going to help make a decision later this week . I genuinely cant thank people enough for their kind and factual input to both my posts.
Lyn no my PSA wasn't after a biopsy , but I take your point about " higher isn't worse " - I think its the alarming rate of climb which is important . I took the time to read blog of your husband and his op and your story . It was important info for me thank-you.
Maureen thanks for replying again with your comments . The silly thing is that El and I agreed if anyone can probably adapt sexually then its us !! I wont add detail to that haha.
El and I actually get to have a whole day and night together today -- something we never manage due to no parents around etc. But friends have rallied round to make it happen . So lucky us .
Its strange that surgery was the worst thought in the whole world , yet I might be slowly getting drawn back towards it . But im hopeless at making decisions . I think I already said that ! Any way for 24 hrs starting now im not even going to think about it !

Chris x

If life gives you lemons , then make lemonade

User
Posted 27 May 2015 at 16:56

So I dont know if this is good or bad!! El and I met surgeon today and basically the MDT meeting had removed my opportunity for Oncology treatment ( i.e. HT / Bracchy / RT ) .. They decided I need radical prostatectomy with bladder reconstruction and try to preserve nerve bundles ( although some at meeting wanted them out aswell ). Lymphh nodes too .

Sort of glad the choice has been removed from us , but at the same time gutted this is our future !! Incontinence may be ok , and maybe sexual function , but he obvs aint assuring anything !!
Operation 15th June , a week after my 48th birthday .. Yet again surrounded by "" much older "" men in the waiting room . Just seems so unfair but I will have to live with it.

Not feeling great as you must imagine , and reverting to bipolar mode . But we'll see ! Im not sure this is what I want , and it IS my life , but I basically i have no choice due to my circumstances. and responsibilities .

Sorry for rambling -- San Miguel again !

If life gives you lemons , then make lemonade

User
Posted 27 May 2015 at 18:23

Not rambling Chris, San Miguel or not.
You are expressing your thoughts on today's events. San Miguel may be in the background but he can't make any decisions for you can he !!

The choice - no choice- well as you say it's been made.

At 48 you have many many years ahead of you. It may be a different life but it will still be an interesting one.

El is there by your side. She is fully aware of what the consequences of your op MAY be.

You can tell from the operation results of the men on here that not all are the same. Some are far worse than could have been expected given their original scores, some are better off than they ever thought they could be.

Keep focussed on your wife, your little lad and the fact that you want to be there for many years to come, to watch that little fella grow up and make you proud.

I can't comment on your bipolar mode except to say you are very aware of how it affects you so hang in there until you can come out the other side.

Best Wishes to you and El Chris.
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 May 2015 at 18:26

Hi Chris,

Sorry to read that your options appear to be limited to surgical intervention only. Did your MDT explain why they felt that this was the only route forward?

As for the side effects, they can not assure you of anything. None are guaranteed to happen just as none are guaranteed not to happen. The most likely side effect is for a ling and happy life, albeit a different lifestyle but you do get used to that as time passes as you adapt to your new normal lifestyle. Bear in mind that you will tend to get here the worst case scenarios I suspect as these will be people looking for help and ideas to improve their lot after surgery etc. Most men will cope with zero or minor consequential interference and not be online asking for help. Or they may be elsewhere on others sites.

If you are to have the op, will it be open or robotic? I am not sure how much work you will have done but it seems a lot, so may be open?

We have all been in the waiting room full of older men, wait until you get to the ward. I thought I was a youngster at 55, but you are lucky that you were diagnosed, do not forget that.

atb

dave

Edit to add, EF may take some time to recover, some men get it straight away or PDQ, some men take a while, some men need artificial help. No point worrying about this until you have to deal with whatever state you are dealing with.    

Dry orgasm, some women prefer this.  For example no damp patch in bed, no potential discharge if engaged in oral sex.

Urinary incontinence, may take a while to recover this, some men get to back straight away, or PDQ, others tale longer, some need artificial help.   Again, no point worrying about this until you have to deal with it.  

Whatever issues you encounter you are fortunate to have beside you a loving and supportive partner, so you will not be dealing or coping alone.

 

 

 

 

Edited by member 27 May 2015 at 18:33  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 27 May 2015 at 19:07
Hi Chris,

My Husband is pretty much in the same position as you and a young pup at 46! His only option is also Surgery, he is having Da Vinci on. 9th July. When we saw Oncologist they said he has poor Urine flow so if the wanted Brachytherapy he would have to have a TURP 6 months before so really decision was made as there was no need to have 2 ops in 6 months - he has now got his head around it and at least we know the PSA will go down straight away. As for the ED and incontinence somebody had written here recently that you need to decide what is most important to you and in what order so we agreed that Life, Continence and ED are the most important to him. Also our Oncologist said if he was talking to a man 10 years older he would advise watchful waiting but as Stuart is so young he couldn't guarantee how quick/slow the Cancer would progress in a younger man and we could be in a worse position 10 years down the road when he is still a young 56.

I hope it all goes well and as you said the decision has now been taken out of your hands so now is the time to do your pelvic floor exercises before the big op, it helps with the incontinence😊

Best wishes to. You and El,

Trish

Edited by member 27 May 2015 at 19:08  | Reason: Not specified

User
Posted 27 May 2015 at 19:15
Definitely not rambling Chris, you've been in turmoil trying to select your option and then finding out that there was actually only one on offer - a spanner in the works to say the least!!!

Steve said he wished that he had been "told" what he was having done then he wouldn't have had to make a choice, it would've been made for him. But your choice has now been made for you, a treatment plan sorted and your surgery booked.

El is there for you every step of the way and the PCUK "virtual buddies" are here for you too if you need a little extra support, but you know that already.

Enjoy your San Miguel, you earned it, I hope El's getting a glass of something nice too?

All best wishes

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 28 May 2015 at 17:10

Hi its Chris
Thankyou for your support as always . I got drunk last night so haven't responded politely as I should have done . Maureen it will be interesting to track your journey as it was what I was offered then taken away from me . But I couldn't make my mind up anyway haha .
And Trish its nice to meet you . So your husband and I will be on the same journey but me first Grrr . It will be great to exchange notes and advice etc . All the best luck .x
Thankyou Countryboy as you have given me some hope and good advice these last few weeks and it will be taken on board . Its going to be Lapro by hand . Ive not nagged for robotic or anything but he has great pedigree -- I have a consultant friend who had a major sniff around.
Thankyou Sandra for ongoing support. It all helps . Im trying to be brave ( I am brave and used to pain ) . And im not going to post on here whinging. Im not great inside -- in fact im distraught massively. And I cant read the future . And im going to hate incontinence ( might be worse due to bladder reconstruction - the cancer is on the bladder but not in it ), and im TERRIFIED about erectile dysfunction as it has always been so important to me ( maybe unhealthily so ) . But we are who we are .
Obviously I wont be posting now other than to maybe help others on their posts . I want to try and share my journey with others ., as ive taken comfort and support from reading theirs .

So here we go -- awesome 48th on june 7th hopefully , then in someone elses hands on 15th June . We'll see how it goes !!

Chris

If life gives you lemons , then make lemonade

User
Posted 28 May 2015 at 20:50

John had his bladder reconstructed as part of the RP (but open surgery not LRP) and if anything, he was dry more quickly than most.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 May 2015 at 22:49

Chris

I have a brother who is bipolar, so I have some understanding of your thought processes. You will worry more but, easy to say and not so easy to do, trust in whatever decision you make, ensure you get full physical and emotional support from day 1 by talking to all parties involved, (medical and family), and you won't regret your choice.

I am enjoying life more than ever 13 months post op, and you can do the same.

Paul

Stay Calm And Carry On.
User
Posted 29 May 2015 at 15:02

Thank you Paul and Lyn. I AM distraught but am accepting what has to be done and will just grit my teeth and get on with it. We have good back-up and support both mental and physical - even spiritual from some friends

I today UPDATED my profile to explain exactly my journey should anyone wish to read it or someone new maybe compare it to their own circumstances . Thank-you to Prostate Cancer UK online Community

If life gives you lemons , then make lemonade

User
Posted 31 May 2015 at 11:28

I had such an enormous wobble last night , feeling violently ill , tired , depressed , shaking inside etc . I just had to hit the sack after what had been a spell of slight positivity.
Just feel so wretchedly unhappy about what is about to happen me , and how it will effect everybody. I massively have to apologise to people on here that are in the sensible camp , but not once since this happened to me have I thought "oh no i've got cancer / I must get this out of me / I'm going to die " . All I can think , and what keeps going round and round in my head is " I don't want the operation / I don't want to go on / I don't want this to change my life / I don't want this to affect my marriage as it will / I don't want the inevitable horrible arguments ahead , I don't WANT to be blo...dy Impotent at 48 "
Round and round in my head making me sick to the stomach , as I don't have any choice . I keep making the right noises to people saying " Yeh well I have to do the right thing for my wife and family " . When in fact I don't want to do it !
Is it always the right thing for a man to "man-up" , "do the right thing " and " be there for everyone" , or do you get a choice in your own life - as at the end of the day it is your own life !
El and I see the family doctor together on the 2nd , and straight after we get an hour together with my lovely compassionate female psychiatrist , who is genuinely worried about my near future .
I followed Louise's post so closely yesterday and it broke my heart . I feel so sorry for them both and hope that it all comes good. I sympathise for them both . It made me so sad as I know in months I will be in the same boat and it sucks to be honest that people have to go through this .
I read her last post last night , and just saw me down the line......

Quote
""" I think the fact that he has (touch wood) been cured is part of the problem in a weird way. He had no symptoms so went from being completely well to incontinent and impotent. And because it was caught early and he was cured, everyone keeps telling him he's been very lucky. And he doesn't feel it""""

If life gives you lemons , then make lemonade

User
Posted 31 May 2015 at 12:27

I wonder if you will be able to receive or process the help that you need here? Maybe you could consider altering your thought cycle? Have you considered speaking to a counsellor, your GP or anyone else who may be able to help you?

Most if not all the possibilities that you have expressed concern about may not happen, yet you appear to be planning for the future as if the worst case scenario has happened?

The only fact that you have not considered is that you may not come around after any surgery? When you are about to go under and the anaesthetist casually informs you that there is a 1 in a, I forget how large the next figure was, but it wasn't large enough for me, it is rather sobering. And then you wake up, and it is done.

While there may not be much control that you can exercise over the physical medical aspects of your situation, there is something that you can do to control how you deal with it mentally and this will impact on how those around you deal with it and you.

Irrational thinking serves no useful purpose.

Hopefully you can alter yours?

artb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 31 May 2015 at 13:34

Chris I think the fact you are seeing your Psychiatrist on Tuesday is good. Hopefully she will be able to offer you the support you need.

I am aware that bipolar can cause delusional or irrational thinking. But for what it's worth, and in my opinion, I don't think your thoughts are irrational. If someone had said to me there's a real chance you will be incontinent and impotent by your mid fifties I would have requested they put me down first.

Your thoughts are rational as you have read some of the stories on here and it makes your dx real. However, most of the people on here are here as they have ongoing problems. The majority of men with PCa won't even have seen this site. A lot of those men will now be getting on with their lives and will have got over their side effects.

I hope your consult with your Psychiatrist goes well and you get the support you need.

Keep posting mate as people who are on here are standing with you

Bri

Edited by member 31 May 2015 at 13:34  | Reason: Not specified

 
Forum Jump  
©2019 Prostate Cancer UK