The dreaded return of the disease - Post Op PSA rising

User

Posted 02 Nov 2017 at 23:30

I read about anti-oxidant supplements interfering with radiotherapy

Well I’ve been on (daily)

Pom juice

Pomi-T

Green tea

Lycopene

Since my operation - so waste of time and money now that my PSA is on the rise again - I’ll stop it all and mention it to the Oncologist

User

Posted 03 Nov 2017 at 13:32

Thanks Lynn, I agree it is a postcode lottery. I was told the enema was also to make sure the rectum was clear of gas and not moving anything from the planning scan.

Thanks for the advice on using quotes too, I hadn't realised.

Best wishes,

Ian

Ido4

User

Posted 20 Nov 2017 at 23:51

Appointment with Oncologist on 4th December

Plan is for Hormone therapy then radiotherapy apparently - I will get an idea of the timescales then I guess

Really sucks to be a cancer patient (again)

User

Posted 04 Dec 2017 at 12:07

Had the Oncology appointment this morning. A very nice Consultant

She fully informed me of all the risks, which, although I knew them, it felt like a blow from a sledgehammer and going back in time to 3 years ago approaching surgery

Plan is to start on Bicalutamide for about 6 weeks then radiotherapy early in the New Year

Then staying on the hormone therapy for 2 years (gulp)

I thought it wouldn’t be as long as that as I hadn’t taken that in from some above posts

😟

Edited by member 09 Dec 2017 at 15:30 | Reason: Not specified

User

Posted 04 Dec 2017 at 17:12

Are you on bicalutamide and then Prostap Bill? I was on bicalutamide for 3 weeks I think. After 10 days I had my first prostap injection. Hormone therapy for two years after finishing radiotherapy seems to be standard. It's also good that you are starting treatment while your PSA is still 0.2. Outcomes are much better when the salvage treatment starts at low levels of PSA. Best wishes with your treatment, Ian.

Ido4

User

Posted 04 Dec 2017 at 17:21

Best wishes to you. Kind of in the same boat as you know. I’ve totally refused RT on a whim but it’s different for you with a cure chance. I’m putting off any treatment for as long as possible if I’m incurable , and will then take the HT and Chemo route as necessary. RT for pain possibly. It’s a great persuader I guess. Stay strong

User

Posted 04 Dec 2017 at 22:30

Originally Posted by: Online Community Member

Are you on bicalutamide and then Prostap Bill?

No, I’m going to stay on bicalutamide 150mg tablets for the entire 2 years (because I’m youngish at 48 apparently)

I will be asking for Tamixifen as I don’t want any breast pain/growth type problems

User

Posted 04 Dec 2017 at 23:39

Originally Posted by: Online Community Member

I know our situations are different Chris but I’m really struggling with the idea of RT. The oncologist was very candid, laying out the likely nerve damage and possible incontinence - not to mention possible bowel problems with RT - jeez

I’m 48, don’t want those problems. I’m fine now, no ED and fully continent - just some small growing cancer cells somewhere. I mean, there is a chance of cure, BUT only a chance, I’m now worried about going for the radiotherapy and then finding out a few years down the line that it hasn’t worked, but that I’m incontinent and impotent too?

This is a tough time, part of me wants to avoid RT and hope for as many years as I can get whilst fully functional

Goddamn I hate this disease

User

Posted 04 Dec 2017 at 23:52

We all unfortunately have to make our own decisions. At 65 on a pad a day and having to use caverject is a price for me worth paying for being diagnosed and treated. If a 'cure' is available, ask yourself where you'd like to be in 5, 10, 20 and 30 years.

What will life's opportunities offer you? What could you miss? I watched my dad die a painful death with PCa that could have been avoided as he left his treatment too late.

It may seem harsh, but ask yourself these questions. It will help your decision.

Paul

Stay Calm And Carry On.

User

Posted 05 Dec 2017 at 00:09

I’m being selfish I think, I have a lovely wife, 3 daughters, 20, 13 and 11

I want to be around for them as long as I can but the selfish part of me can’t stand losing continence/potency and would rather die - I guess that’s the irrational and emotional part of me

I would love 20 to 30 years more life - which might be possible but man, if after radiotherapy I get the bad issues I’m gonna really struggle

User

Posted 05 Dec 2017 at 02:25

It's a difficult call, made more difficult because of your age and potential many years if the remaing cancer cells can be dealt with and possible late efects of RT. HT plus RT is the most typical way forward but I wonder if early chemo might be a possibilty. Perhaps you could sound out your consultant about this and any other alternative to RT considering your aversion to and reasoning not to have it.

Barry

User

Posted 05 Dec 2017 at 07:22

Well you much sound like me. I’m not sure I’d have had RT after the op even if there was a chance of cure. I so desperately didn’t want the op I had a breakdown at home ( I suffer with bipolar) , then I was persuaded but walked out of the pre op assessment days before. Then I had such a breakdown in hospital I spent 15 days in there. Quite frankly I just don’t want / can’t stand any more treatment I think. Especially now I’ve regained function. Selfishly also , a life to me without sex doesn’t seem like a life.
I am in touch with a guy off this forum who is 48. He had the op. He got his sex life back. He has now had 5 successive rises in psa to about 0.13 I think. He’s flat rejecting it at the moment based on his QOL.

User

Posted 05 Dec 2017 at 09:35

Sounds like a similar set up to me. I had the RT very soon after the RP, and Bical prescribed for 2 years. To be honest, the RT was horrible, but I don't know if all people have that effect. I've just had the 6 month post RT results, PSA is now <0.0003, Tamoxifen is doing a sterling job and the Bical leaves me with a bit of fatigue. The onco says I can stop Bical at 18 months if I want. Very tempting!

The RP was full nerve sparing, and erections were trying to come back until I started getting zapped. Now it's pump use daily, no libido (which in some ways is a bit of a blessing as my bits can't/won't play anyway) slight dribbles but nowhere near full incontinence.

Was it worth it? Dunno. My take on life is that I'm not too fussed about it. Life is a terminal disease anyway, I've had a good one and am personally happy to bow out as and when required. I've certainly come very close on many occasions! However, my 10 year old daughter would like me to be alive, as would my wife. I could bin the treatment and have a better QoL for me, but I'm now bigger than just me as I have my family. The thought of being able to walk my daughter up the aisle, to see her perform on the big stage, to be there when she falls, these are the things that have guided my choices.

Hey ho, the sacrifices of being a parent and a husband. If I'd known that when I signed up to those roles, would I have still signed up? Yes. Sex life is on hold (hopefully temporary), slight annoying leakage daily but manageable, and I get to share the love and life of two fantastic people. I get to smile and enjoy my two roles. It seems life is bigger than just me.

User

Posted 05 Dec 2017 at 13:11

It is a difficult call. I am 57 and had the op July 2015 followed by HT starting December 2016 and RT March/April 2017.

I found the RT tough, very tiring, but it went well, no issues with preparation etc. My oncologist was really worried about bowel and bladder problems, bowel more so. Once the planning scan was done with a full bladder the risk scores were all well within tolerance.

I now have a little incontinence issues with dribbling and a bit of leakage whereas after the op I was quickly dry. I have zero libido and no erections which I have found really tough but I wanted to grab the final chance of a cure and my wife agreed with that decision.

Like others have said only time will tell whether I have made the right choice. I am on PROSTAP until end April 2019.

I have a horrible feeling given my histology I am not done with this vile disease yet.

But I know the evidence points to having had the RT will slow down progression.

Your PSA doubling time seems quite slow, mines was 1.2 months.

You have to weigh up the risks and benefits of treatment/ no treatment.

There is no right or wrong here unfortunately.

Ian

Ido4

User

Posted 05 Dec 2017 at 15:27

I’m worried sick about this situation to be honest

Since the shock of the PSA rising again I think I’ve been kind of suppressing the impact, but yesterday’s Onco meeting brought it all sharply and scarily to the fore.

I haven’t at all thought about not having the treatment till last night and now feel in a real dilemma.

Don’t take the treatment and see what comes i.e. continually rising PSA and control type treatment, spread, bone mets, early death (but continent but probably ED due to hormone treatments etc)

Undergo hormone + radiotherapy and risk incontinence, bowel problems, ED, possible bladder and/or bowel cancer - with no guarantee that the cancer will be gone for good

Both don’t seem good options from where I’m sitting, but I guess option 2 offers possibility of cure and also possibility of maybe minimal side effects

I hate this disease

User

Posted 05 Dec 2017 at 19:01

Had a sensible think and discussion with my wife

I’m gonna take the treatment plan, what will be will be, what’s important is being alive as long as possible for my kids, regardless of my quality of life.

Who knows, it may work out allright

User

Posted 05 Dec 2017 at 19:14

Good one !! It can only be your decision. And a great wife helps. I guess however frightening, if the word cure is still being used.....
good luck friend
Chris

User

Posted 07 Dec 2017 at 23:09

All the very best of luck with your decision. I have gone through a similar difficult decision and experienced the same thought processes and feelings. Kicking and screaming I have finally come to the same decision as you. RP in Sept 15 but positive margin and PSA did not go below 0.03 and has gradually crept up. I did the diet and vitamin thing (still doing the vitamins which I probably need to discontinue) to try and stave off the need for further treatment but a month ago in view of 3 successive small PSA raises I started hormone treatment (will be 6 months) with radiation planned in the new year. I really really wanted to avoid further treatment after taking the RP hit (which worked out better than I expected) because of the potential additional side effects and the uncertain "cure" odds. At the end of the day after a lot of angst I have just decided to go for it given my relatively young age of 58. Does anyone know how many weeks before radiation I should cut out the Vit D and Pomi T?

Christophe

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The dreaded return of the disease - Post Op PSA rising

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