Chris J's Journey

I’m not brave nor a coward , I’m not an inspiration ( Irun is !! ). I am a thinker , well educated and a bit of a risk taker.

I’ve actually not wanted to post for fear of unwelcome comments, but felt this huge thread needed updating.

Not once in this 5 yrs post op have I had the luxury of a tiny psa nor a glimmer of hope cure-wise. Even the much refused SRT was always explained as unlikely to be curative , so I took the QOL path and have no complaints that the last 5 yrs have been a great adventure for us all. And the nicest little job as school caretaker that I’ve ever had ( but just decided to hand my notice in ).

So 5 long years of watching my psa go stupid , at least 6 CT and Bone scans and 2 PET scans , all with nothing to show until recently. A true case of micro-mets for sure with last psa months ago at 440.

I’ve had a bit of a cancer bomb go off inside me this last 6 months. Multiple spine , rib and a hip met. Two large abdo lymph’s which have decided to travel to clavicle and a lung also.

It’s been 2 weeks of long talks with Onco , GP , specialist nurses and hospice councillor. At this point you realise just how specialised and empathetic and supportive all these people are and how neutral they are with no pressure. My GP is director of palliative care at a local superb hospice and has already secured me a place there and counciling within a week. He’s known me 8 yrs solid and my 28 yr history of mental struggles and bipolar. Seeing the state of me at the moment he feels we should treat me and my fears and wishes , rather than just the cancer. Most councillors say there is no right nor wrong and that you have to make your own decision. Ultimately you aren’t responsible to anyone nor have to justify yourself to anyone. The buck stops with you.

A close friend lost his wife to breast cancer. He told me at the end she wished to hell she hadn’t had all the treatments and felt she had just wasted time ill and depressed , and all the blue lights and pointless invasive procedures sounded horrible. I asked my Onco to his face if he thought I was a tit and he laughed really loud. He said he way preferred a challenge with an educated couple rather than someone who just did everything he was told.

In the next few weeks I’ll be getting a large single palliative dose of RT to ribs and spine which should cleanly end all this griping pain I have. Other than that I’ve stuck to the plan. No HT and chemo not available anyway. Big family holiday booked and hopefully some lovely trips with my wife over the next year. That’s what I love most.

Sorry for the epic diatribe

Love and wishes and support as ever to all going through this

Chris

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

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

I seem to be tolerating Decapeptyl really well with the only real bothersome effect being hot flushes but still tolerable. Maybe 4 lbs weight gain , no moobs nor soreness , aches and pains and fatigue still bothersome but not worse. A bit of brain fog for sure. Definite reduction in libido but not gone completely. EF is superb still and on demand due to regular pump and daily Cialis , but orgasm is very elusive lol. Doesn’t stop me wanting to try.

I do feel at times very negative because there is only one way an incurable prognosis can go , but mostly I keep my chin up and carry on and enjoy what I can.

Love to you all x

 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

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.

Hello forum friends. I’ve just got my latest psa back after nearly 7 1/2 yrs of G9T4N1 cancer. And just coming 2yrs on Decapeptyl after spread to spine ribs and lymph nodes.
Pleased to say another drop albeit small from 0.77 to 0.59. So obviously I’m reaching a nadir but I’m hoping it will hold a fair while before turning. Enza in the bag still !
Feeling blessed considering the sad stories on here lately. Living life the last 3yrs better than I ever did before cancer.
Stay well and strong all
Chris x

Edited by member 20 Oct 2022 at 16:24  | Reason: Not specified

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

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.

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?

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

That's quite patronising Lyn.

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

Julie, you got moderated for using profanity! That must be a first - usually you get moderated for swearing 😂

Chris, the response to HT is brilliant, and it seems you are in the 20% who can still get erections on HT.

My cholesterol was just over the normal range and statins offered if I wanted. This was a month before my PSA of 58 was discovered, and I deferred starting statins for 6 months to avoid starting them with all the PCa meds, so I'd know which side effect was which drug. I didn't get any side effect from the lowest dose statin I was on, and it halved my cholesterol, leaving me in the middle of the normal range.

HT can push up cholesterol, blood glucose, and blood pressure, so it's a good idea to keep an eye on all these. It is known that lack of testosterone increases the chances of death due to cardio or vascular events via this route.

Wishing you all the best in the circumstances, and keep it up, as they say...

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

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

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

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

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

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 

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.

Well done, Chris.

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

David

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

Onco consultation May cancelled. Telephone only. Bloods done in advance locally.

Psa 440 , all other bloods ok except for constant decline in white cells and lymphocytes since surgery June 2015.

Liver surviving it seems ??

Take care all

Chris J

Chris & Chris ....

I had 2 years of HT (last injection of  Prostap last October) and I’d like to say I will never go back on but who knows the future. I was very lucky with the physical effects but not so lucky with the mental issues. It decimated my mind and I thank my wife and my counsellor for getting me through. I don’t need to reiterate what I’ve put on here previously about my mental struggle but I believe if you have underlying issues already the HT may exacerbate those. As the HT is wearing off I am feeling more positive and less sensitive and am dealing with my past better.

Unfortunately you can’t second guess how HT will affect you personally.

I’m sorry to sound like a downer for HT but that is my journey. I think it did the job regarding the cancer though so my consultant is happy.....

I do hope that some of the charity funding goes towards something better than just stopping/blocking Testosterone.

Best of luck to you two Chris’ and all the others in the same rickety old boat. Remember that you can try the different variations of HT to see what suits and also it’s possible to have ‘holidays’ if it’s doing the job at keeping the cancer at bay.

Phil

I was going to change my avatar to me in the blue dress but decided to give you Tulip 🌷 instead because I know you love her .

My friend no one can choose your path , only you can . Life is a funny old F****r ( sorry for those that don’t know me ) . If any one is easily offended  then please don’t read on . 

Like a few others on here ( and I am thinking of all of the Mavericks that in the words of the song , “ I Did it my Way “  so far you have you have done exactly that . You have done it your way and I take my hat Of to you .

We can all offer advice but no one can live your life , it’s yours to own and my goodness you have owned it all the way through your journey .

as you know I don’t touch base on here very often anymore but I do sit back and watch , you have owned this shitty cancer from the start , and going forward you will make the right decision for you .

Trevor did the 6 months on radium 223 and I documented everything. It’s all on my posts if you want to look . 

Lots of love 

BFN xxx

Edited by moderator 13 Sep 2020 at 08:03  | Reason: Profanity

You've done really well to hold out.  Also to be on annual psa tests without treatment.  There's a lot of goodwill on here, let's hope for the best.  Peter

the very best of luck with this next round of treatment, I hope the therapy benefits can enhance you QOL.

I have only started with this ( expleative of your choice )’ing thing, and your desire to not let it win is inspiring.

Buzzy

So glad that life is still here in a generally good way Chris. I reread your posts from the last year or so and they gave me great hope that when life can look so bad one should never give up because you had no idea that you would be here now.

look forward to reading your posts for years to come (for both our sakes)

I love good news. Brilliant,so pleased for you. David was also diagnosed 8 yrs ago. He is now stage 4  his last PSA was <0.1 next test Monday so we are bit jittery. He’s a little older than you are 72, but fit healthy and has lots of plans. 
Enjoy your summer on the farm. 

Leila 

Well done Chris, I’ve just read out your post to David and he said ‘ well done mate’ he’s sadly has no libido, and he hates that, but his PSA was < 0.1 in July. It’s nine years in September since he was diagnosed G9 Tb3. He gets tired, and has muscle pains most days. 
He writes music, plays, sings, gardens. He interested in economics ,and ,keeps abreast of world events. His latest song has been taken up by a well known singer, so he’s enjoying that. 
David’s 74, and still has a passion for life, and living, though he does find it very hard mentally sometimes. He hates the idea of having cancer. We are both involved with a local charity for cancer and he plays music at the local school concerts. 
Keep flying them planes, keep fishing and it’s brilliant you are supporting other lads with this bl##dy disease. 
Take care 

Leila 

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

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

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

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

"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!

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 

Got to pre-assess this morn and totally broke down again. Utterly completely.

Nurse . Prostate nurse specialist , consultant urologist I've never seen , and anaesthetist ended up in room. Decided they were forcing consent , so radical P now off on Monday. I couldn't apologize enough as I realize what a storm I have caused. I'm well brought up with decent morals , but at the end of the day I don't want the RP and what it will do to me. Urologist held my hand and couldn't understand why it had got this far.

Bombarded with calls now and just want peace

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

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

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

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

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

Paul

morning chris

just offering another hand for you to hold

nidge

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

Maureen x

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

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

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

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

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

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

Take care.

Paul

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

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

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

Great news Chris,

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

Keep us all posted.

Paul

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

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 :-(

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

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!

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

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

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

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

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

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

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.

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

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

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

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

Wishing you all the best with your forthcoming appointments.

Arthur

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

Paul

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

Paul

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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.

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

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

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 

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

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

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

Hi chris
Happy anniversary
Enjoy the day with your OH

Regards
Nidge

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

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

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

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

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

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.

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

Chris,

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

x

dave

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

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

********

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

Henry

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

Thoughts are with you.

Leila

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

Keep your chin up.

BFN

JulieX

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. 

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

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

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.

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

Chris

Nice one - fingers crossed the winning run continues.

Ray

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

BFN

Julie X

Excellent outcome

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.

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.

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 :-((

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.

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

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

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 !

Bloody annoying Chris.

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

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

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

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

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

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

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

BFN

Julie X

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

BFN

Julie x

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.

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

BFN

Julie X

Debby