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Chris J's Journey

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User
Posted 08 Jan 2019 at 20:16
It is acceptable to choose not to have treatment as long as that is an active and considered choice.

I am hoping that they will agree to more scans rather than try to persuade you to take action based on an ill-defined hypothesis :-/

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

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

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

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

User
Posted 09 Jan 2019 at 11:52
I believe you said that you were expecting a PSA of >100, Chris, so 82 is a little better than anticipated? What's the objection to HT, as a matter of interest? Is it you or your oncologist who's declining it?

I wish you all the best for the future,

Chris

User
Posted 09 Jan 2019 at 12:00
Given consistent doubling time it should have been 150 ish. They won’t prescribe HT until there is visual evidence of distant spread. However I am T4 as had 5 lymph nodes cancerous at surgery. I’ve had every scan going. Sadly I’m terrified of HT and what it does to a man. I’ve returned to full function in all ways post surgery, and shallow though it may be , I don’t want to become a monk mate. My mental issues wouldn’t be able to cope I’m quite sure. But who knows ? I’ll decide then
User
Posted 09 Jan 2019 at 14:38

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

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

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

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

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

Phil

User
Posted 09 Jan 2019 at 14:48

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

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

All the best,

Chris

 

 

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

Bri

User
Posted 10 Jan 2019 at 09:27
Good luck with the scans Chris, hope you get the next six months treatment free as you hope, then the next and then the next etc...

You have been extremely helpful to me and others in what are normally taboo discussions and I am inspired your resistance to treatment without anything to target. So thanks for that.

I so far have undetectable psa following RARP almost two years ago but with extracapsular extension there is a fare chance of reccurrence. If if it does reccur I too will resist scatter gun RT to the prostate bed without something to target as I already suffer with IBS, fissures, heamaroids uranary frequency and urgency, ED etc and fear making things worse.

All the best

Cheers

Bill

User
Posted 10 Jan 2019 at 10:16
But your situation would be different Bill. If your PSA started to climb at some point in the future, you would be demonstrating classic pattern of a small recurrence in the prostate bed for which salvage RT would be highly likely to be successful. CJ was in a completely different boat - his PSA never went down , which is evidence of remote clusters or micromets.

John's PSA was undetectable for a couple of years but then started to rise; salvage RT/HT 6 years ago seems to have sorted it out. The same goes for many others here. That pattern of recurrence should not be compared to CJ's situation.

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

User
Posted 10 Jan 2019 at 15:22

CJ

Just going to say best wishes and keep going mate.

Thanks Chris

User
Posted 10 Jan 2019 at 17:36
Lyn, thanks yes I get all that completly. All rhetorical at the moment as My psa is still undetecable. Next test first week of Feb. I dont want to hijack CJ's thread so will elaborate on my thoughts in another thread.

Cheers

Bill

User
Posted 01 Feb 2019 at 13:06
What a horrendous last week !! I’ll find out if I have advanced spread next Wednesday coming. Trying to keep it cool outwardly but inside sh***ting proverbial bricks. Last Friday’s bone scan took 6 hrs in hospital as one of the scanners broke down. Sat in waiting room with an end-stage guy who’d finished Radium 223. Was horrendous watching him trying to walk , move , cope with it all. Then this Monday my full body CT. Again ending up much longer taking 4 hrs. The Oncology scanning suite is a very sad place to be. Scans constantly being cancelled due to very ill people being brought down which just brings it all home to you. My heart is in my throat permanently , my psa 82 ,and surrounded by stress. Hoping for no bad news , yet even good news only prolongs the inevitable waiting game. Feeling a tad peaky. Have a good weekend all x
User
Posted 01 Feb 2019 at 13:37

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

Will be thinking of you.

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

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

Phil

User
Posted 01 Feb 2019 at 14:20

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

David

User
Posted 01 Feb 2019 at 16:47
Chris, good luck on Wednesday. With your history, I wouldn't be surprised if you have micromets which don't show on the scans. In this case, surely systemic treatment would be required? I know you have a thing about QOL but surely you'd go for life rather than its absence? Plenty of options available, a few of which I've had. Keep the faith.

Ac

User
Posted 01 Feb 2019 at 17:42
Your doing well to hold it together Chris.

You've givin so much advice to me and others here I wish I could return the favour but all I can do is wish you all the very best of luck with your results.

Cheers

Bill

User
Posted 01 Feb 2019 at 18:01
Good luck for next week Chris. Perhaps a couple of slurps to ease those jangling nerves

Stay strong mate

Bri

User
Posted 01 Feb 2019 at 18:37

Good luck for next week Chris. Will be thinking of you.

Ian

Ido4

User
Posted 01 Feb 2019 at 19:05
Ac , rumour control has it that if they have never visually seen evidence of distant mets, and that you have refused the next obvious NICE step eg SRT , then you ain’t getting no very expensive systemic treatment like HT or Chemo !! Yes I’m full on QOL which may be my downfall I guess , but unless they show evidence then I’m not having my entire 51 yr old recovered pelvis area spattered with RT. I think we’ve agreed symptoms will steer me now , and in that case then I guess I’d clutch at anything. Some men on here have tried castrate level HT and come off it , but maybe with much lower psa and after SRT. I know that you think you may know me , and I’ve been So grateful for your input to everyone over the years , but you know I may pick demise over existence rather than life as I see it. As I said the other day , the man I met was in so much pain he was just trying anything and everything, but his wife said he was all done with it at 71. No one likes pain. Nasty nasty slow-burner disease this that eats at you mentally and physically I guess. Some of us are stronger than others ....
User
Posted 01 Feb 2019 at 20:10
Nice to read the you are still controlling your destiny Chris. Courageous.

Good Lad.

ate

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

 
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