Chris J's Journey

Chris J's Journey

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 10 Sep 2015 at 22:44

Chris at last! Glad it all went to plan and nothing wrong with reflecting on life it's all part of the process. Hope you enjoyed you're few beers and when you get home tomorrow hug everyone tight.

Xxx

User

Posted 10 Sep 2015 at 22:47

Great stuff Chris

All the best, Arthur

User

Posted 10 Sep 2015 at 22:55

Hi Chris

So pleased that it actually happened for you this week, and well done for going it alone. I'm sure we've all done some thought provoking reflecting at sometime but it often brings back the good times too!

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).

Before you know it you'll be back with the family tomorrow, make sure you have a great weekend :-)

All the best to you and El

Maureen & Steve x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

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

User

Posted 16 Sep 2015 at 19:33

Hello Folks
First Oncology visit today -- not entirely happy with outcome !
Thankfully the PET scan was clear and he explained I was very lucky to get one. The reason they gave it me was because my post-op PSA was so high and climbing that they suspected a spread. The PET only finds tumours / cancers greater than 7mm in diameter. They re-took my PSA today to see if it was high enough for the scan to have been accurate. Result tomorrow. He still believes what was left after the op shouldn't be enough to give that PSA and climb rate. He believes " something " is secreting that PSA.
Re the pain in my bladder and stomach , he took that very seriously and another MRI scan to be done ASAP.
Treatment plan is 6 months HT starting today ( Bicalutamide 150mg / Tamoxifen 20mg )
After Christmas 6 1/2 weeks RT
There were no " Trials " , Chemo , alternative HT routes etc to follow he said . With my post-op results they wouldn't have given me RT if it was 10 yrs ago .

Just as things were cheering up on the ED front , I was told half of the drugs cannot be taken with Bicalutamide as very dangerous -- Viagra , Cialis , Spedra. However Levitra and Caverject should be ok. The new pump is fantastic.

Elaine and I are dazed and confused but just getting on with it. What else can we do seriously ?? The Onco admitted at the end of the day they weren't sure what was happening , wouldn't estimate life expectancy obviously etc. I have to try to get through winter with my Bipolar which is always hard , but the thought of RT daunts me and there is no way i'm not having a drink for 6 weeks for any disease .
Chris

Edited by member 16 Sep 2015 at 20:18 | Reason: Not specified

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 08:14

Hello . Very very quiet on the forum all day yesterday . I've been awoken today with a text telling me my PSA yesterday was 2.4 .
So post-op 6 week was 1.5 8 week 1.8 12 week 2.4 ( so the PET scan was a bit too early at maybe 2.2 )
So probably a doubling time of 8 weeks at the moment . As we discussed with Onco this doesn't seem likely to be what was left in the prostate bed generating so much . There is something out there ........... ( or rather in )

I'd be really grateful for any advice or input or opinions from the people on here . Would a second opinion be worth it maybe ?
Best wishes Chris

Edited by member 17 Sep 2015 at 11:51 | Reason: Not specified

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 15:22

Thank-you Dave -- that's exactly what El and I have been thinking. Although he will do his very best for me im sure , at the end of the day a hospital is a business and they have their budgets and treatment limits. I trust him and all the care I have had so far , but he wasn't offering anything other than pure " salvage " with no expected outlook for the future . He wouldn't commit to any success. He actually stated " there is no evidence that having this therapy will be better than having no therapy ( in life terms ) -- but it is advisable ". Life extension was really his only gambit . Which is ok as long as quality of life isn't too disrupted in my case .
Thanks Chris

Edited by member 17 Sep 2015 at 15:23 | Reason: Not specified

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 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 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 17 Sep 2015 at 22:59

How soon is your next PSA? My worry about a second opinion is that you may find other hospitals would not be prepared to offer you the RT - with multiple lymph nodes affected and at least one bone met, they may not feel that RT is going to be a good route to go. You apparently have a very determined cancer - it isn't behaving like typical adeno but nor does it act like small cell or mucinous which must be good news. The next PSA will be very telling. Hopefully it will have dropped like a stone with the bicalutimide.

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

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

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 10:23

Thanks for that great input Roy !
I've spoken at length with my retired head-of-practice GP and she got me a long phonecall with my current GP . He presently works 3 days a week palliative care now and only 2 days in the practice . As such , he knows all the consultants in the area and their experience and the finances of this area / services available etc etc. He has assured me I am in the best hands and that I will now work alongside him and the consultant and Psychiatrist together to try to keep me balanced and on the best path.
So Bicalutamide and Tamoxifen start Monday and my GP will measure outcome
Thanks Chris

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 19 Sep 2015 at 22:49

Glad something has been sorted for you Chris.
It should take some of the worry off your shoulders

All the best Sandra

We can't control the winds - but we can adjust our sails

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 11:04

Hi Everyone
Im really really struggling again today with this all . In fact for a good few weeks now. Most of you that have followed this post know what I am like with my mental issues. Ever since I saw the Onco ive felt terribly down . The LRP was too late and all that is offered is the HT / RT . I don't want to be a baby but I just feel so " cheated " . I was dragged kicking to the operation but slowly but surely things were improving and I felt like life could go on if you know what I mean .
It took me over a week to start the HT , and now ive been on it 9 days I GENUINELY feel awful already. Ive checked this post and when I was put on it ( Bicalutamide 150mg ) before it wiped me out in days. So ive not taken it for 2 nights. Yes I know im bl****y stupid . And although I had to sign the dotted line on the day , I desperately feel I don't want to go ahead with RT in the New Year . I can barely get through a winter as it is with dark thoughts and chronic fatigue . How will I manage it with HT in me , and 33 visits to hospital during the coldest darkest 2 months , to irradiate myself and risk further short term and long term side effects.
Im sorry if you think im whinging but I just cant find the fight like loads of you on here have , and some of you have been through loads more trouble than me . I just feel like giving up instead of fighting it . I don't want " life " to feel like this :-((

User

Posted 05 Oct 2015 at 14:08

Originally Posted by: Online Community Member

Hi Chris

Take note of what Steve said in the last line of his post above

We're here to hold your arms up

All the best, Arthur

User

Posted 05 Oct 2015 at 14:19

Hey Chris

I can only repeat what Arthur has said.
We're all here to help you see this through and truly want you to keep fighting.

My Very Best Wishes,
Cobbles

User

Posted 05 Oct 2015 at 14:36

So sorry to hear that you are struggling Chris!

PM me if you need a chat!

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 15:47

Hi Chris,

Really sorry to hear of your struggle.As always people on hear to offer support. RE. the dark nights and your low mood, have you considered a Seaonally Adjusted Depression Lamp?

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 05 Oct 2015 at 16:16

Hello Chris

Sorry to hear your struggling at this moment, there are a lot of us on here to help you through the dark days.

Remember we need you here with us.

Wishing you all the best

Colin

User

Posted 05 Oct 2015 at 18:15

Hi Chris

I am sorry to hear you are struggling.

I wish I could wave a magic wand for you to make things better but sadly that is not possible. Just wanted to say something to try and encourage you not to give up.

Sending my best wishes for you at this difficult time.

User

Posted 05 Oct 2015 at 18:33

Hi Chris, I can't wave a magic wand either, much as I'd like to for all of you.

I am writing to you from my holiday in Majorca though to repeat what I've said to you before.

Dark thoughts are normal for all of us at times, for you those dark times are part of you and have to be lived with whether you like it or not..

There is no shame in having a whinge, God knows you have enough to complain about and if you haven't got the strength to fight it alone then that's what we're here for, even when we are on holiday !!!

You've probably already got the SAD lamp anyway haven't you,given your history?

Try not to dwell on the POSSIBLE negative sides of the RT. It might not happen.

Get a really good photo of your ever supportive other half with Peter and carry it with you.

Yes the journey through the cold and the dark will be a right pain in the **** but when it really gets to you just get that bloody photo out and remember you have a reason to fight .

You're not whinging or weak. There's nothing wrong with asking for support.

You've got it friend and don't you forget it !!!

We can't control the winds - but we can adjust our sails

User

Posted 05 Oct 2015 at 19:02

Thanks for the replies guys. I've had such a wretched day barely able to get up and just full of tears. By coincidence we are seeing my Psychiatrist tomorrow morning so we will see what she thinks. But the truth is I haven't found a fight. I didn't have one before the op and I have less of one now. Instead of embracing the chance of further treatment , I'm actively rejecting it. El is aware.
I do have a SAD light and use it but I think my issues stretch beyond that to be honest. I also have a picture of my family in my wallet , and some little notes from Peter. It's fair to say my mind is seriously stewed obviously , and I'm sorry if I have offended anybody with my feelings. I'm literally stuck in a rut and all I really want to do , is to do nothing at all.
Chris

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 05 Oct 2015 at 19:42

Just for info. I started HT in the January and didn't start RT until the October which sort of confirms what Lyn is saying.

Arthur

User

Posted 05 Oct 2015 at 20:22

Hi Chris as you know i have done the 33 trips to hospital for RT after RP which i found a pain driving a 80 mile round trip but soon got to make friends at the hospital as same faces where there every day , the days seem to pass by and i must admit missing the others when it came to a end ,I hope you can find your way out of the rut. All the best Andy

User

Posted 05 Oct 2015 at 21:31

Chris
I am posting from a ship in the ocean off the coast of Nova Scotia ..just to let you know I am thinking of you.
Listen to Lyn hear her words she is one of the wisest and most forthright people I know.
Xxx
Mo

User

Posted 18 Oct 2015 at 15:37

Hello !
Well 16 weeks now and I'm in more pain than immediately after the Op. Deep deep abdominal pain in the bladder region. Pain when weeing, pooing and keeping me awake all night. Painkillers not working. I've stayed on the HT ( bical ) for one month. Obviously it isn't a horror tumour as I've had a PET scan.
I have an MRI Tuesday and Oncologist Wednesday. I have two 1/2" tumours on my left adrenal gland which they want to look at again , but will check bladder also. My lovely GP dog-walking friend feels I may have "" Adhesions "" where my internal scarring and incisions have glued to the intestines , causing mucho pain. I've not heard this mentioned on the forum. I've had two clear urine infection tests.
Been sent my 33 RT sessions starting 27th Jan with planning 7th Jan. Not sure I'm doing it yet as they have stated with Post-Op PSA 2.4 it may not benefit me at all ( but advisable ). But they don't have to live with the side-effects do they , which quite frankly is getting harder and harder.
Sorry for a Sunday rant but for me to take painkillers at all is a marvel , never mind at 6am when I have to get my lazy ass out of bed. I realise many on here are far worse off than me and respect that immensely. Just very unhappy indeed .
Chris

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 18 Oct 2015 at 17:06

Thanks Dave
This ain't dull !! Like awful awful childhood constipation. Yet bowels normal and wee normal although painful. Prostate long gone friend so not that. Will try to wait till weds , but Paracetamol, Codeine , and Ibuprofen all together ain't touching it.

Edited by member 18 Oct 2015 at 17:08 | Reason: Not specified

User

Posted 18 Oct 2015 at 20:25

I suppose there's no possibility that you have something else like IBS is there?

We can't control the winds - but we can adjust our sails

User

Posted 18 Oct 2015 at 20:36

Thanks Sandra but think not. I've spent my life plagued by anxiety stress etc with no gut problems. I mean I've been out with the dogs etc but this is progressively worse and I've never once been ok since operation. I'm sure it will be fine -- as I've said I've been scanned to eternity and back. But I'm in tune with my body .....

User

Posted 11 Nov 2015 at 18:01

Hello folks
Just finished 40 mins with Onco. He said pelvis MRI still clear , but due to my results the team feel I am advanced and aggressive. He insists I have RT as in his words recurrence of cancer in the pelvis and the symptoms and the ensuing death are extremely not nice. He said he only saw a case like mine every couple of years ( trust me ).
Despite 5 lymph nodes being cancerous he said he wouldn't treat the lymph area as it would give me Lymphodoema. His eyes spoke a lot to be honest. I guess he was trying to tell me something. A very very lovely guy.
Because of my extremely fragile mental state over Xmas he has agreed to delay RT until early April instead of end Jan. So I remain on HT till then.
Thanks everyone for support and especially 2 amazing people who know who they are , whose help has been vital to me.
Chris

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 18:46

Nothing on offer till after RT. He wants to ensure prostate bed treated whether it has moved anywhere else or not.
Chris

User

Posted 11 Nov 2015 at 19:42

Good luck Chris xx

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