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User
Posted 06 Nov 2018 at 11:02

Hi Everyone, it's been a while since I posted, just been focused on getting well after RP in January. Glad to say incontinence now well under control, only one pad per day. I was rushing everything in the early days and getting very frustrated. Members who responded to my posts all said it would take time, and you know what? they were all spot on. Anyone new to site having trouble and worries re leakage take note do not rush it will happen slowly and when it does boy oh boy does it make you happy.

I had third visit with Consultant yesterday, not good news! My PSA levels have risen again!!

1st visit after surgery (3 months ) reading was 0.032

2nd visit after surgery ( 6 months ) reading was 0.038

3rd visit after surgery ( 9 months ) reading is now 0.067

Consultant says there may well be some cells left in nodules somewhere and he will wait for another 3 months before deciding what to do.

This worries me as it may spread elsewhere in the mean time.

Any advise would be welcomed and hopefully comforting.

All nerves and some nodules were removed in operation. Gleason 3+4=7

Best Wishes to all fellow sufferers.

Barry

User
Posted 06 Nov 2018 at 15:27

Hi Barry,

Sorry you still have some incontinence 11 months after your op. I think I have been very lucky in that regard.

My post-operative biopsy found some spread outside the prostate capsule, but four PSA tests since then have been ‘undetectable’. However, here in Coventry they only test down to 0.1, and if it’s less than that it doesn’t count. So for all I know, mine might be creeping up like yours! Ignorance is bliss.

Both my surgeon and local oncologist said not to bother about any reading less than 0.2, but I saw a VERY senior prostate cancer oncologist last week at the premier cancer hospital in Britain, and he said I should try and find somewhere that does super-sensitive assay down to the nth degree, as it seems your tests are.

But then he said, even if I find a minuscule rise such as you are experiencing, I should avoid any HT or RT treatment for as long as possible, if ever.

He said the next step would be some kind of scan, whether Choline or PSMA to see if any metastases are visible on one. He told me I would not die of PCa - he wasn’t Mystic Meg - and indeed the Sloan Kettering Nomograms confirm it, prognosticating a 98% chance of survival for fifteen years or more.

If I were you I wouldn’t worry, but then I’m not!

Best wishes for the future.

Cheers, John.

Edited by member 06 Nov 2018 at 15:29  | Reason: Not specified

User
Posted 06 Nov 2018 at 16:09

Barry

This is my story, but please remember I am 20 years younger than you.  My Gleason score was a 9, so my starting point was a bit higher than yours too.

Post prostatectomy PSA - 0.014, 0.015, 0.019, 0.014, 0.02, 0.023 - all in the space of a year.

My oncologist recommended a PSMA scan for which I had to pay £2588.  It was thought unlikely that they would find anything with such low PSA readings.  Well, they did, and it changed my treatment plan.  I've since had salvage radiotherapy (awful) and am on hormone therapy.

The problem with the forum is that whilst we can recount our own personal experiences, it is only your own medical team that can advise you on what to do.

On the controversy of the super-sensitive PSA test, I'm a total believer in them.  Had I been in a hospital that doesn't use them, they may well still be telling me that I'm undetectable.

Because of my starting point, I think it was likely I'd always have needed SRT and HT.

I hope my experience gives you food for thought.

Ulsterman

User
Posted 07 Nov 2018 at 14:59

Many thanks Chris, your story inspires me your one very brave Man.

Best Wishes

Barry

User
Posted 07 Nov 2018 at 18:14
Not brave really Barry , and not directly opposing Onco either. He’s on my side. I have bipolar and reacted very badly to surgery and the side effects. My hospital stay ended up at a fortnight. All the signs show I’m a dead man waiting to happen , probably loads of micro metastasis tbh. But nothing shows anywhere and I love QOL more than everything. He knows that too. There will come a time but I’ll deal with it then. I was a healthcare assistant for a year and watched a man die rapidly from advanced PCa over 3 months. His sister said he had had every treatment in the book , and whilst it had extended his life , he had zero quality. He just came off the Abi in the end and let nature take its course. I know it’s not the same for everyone but I think further treatment will unsettle me mentally to a huge degree.
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User
Posted 06 Nov 2018 at 15:27

Hi Barry,

Sorry you still have some incontinence 11 months after your op. I think I have been very lucky in that regard.

My post-operative biopsy found some spread outside the prostate capsule, but four PSA tests since then have been ‘undetectable’. However, here in Coventry they only test down to 0.1, and if it’s less than that it doesn’t count. So for all I know, mine might be creeping up like yours! Ignorance is bliss.

Both my surgeon and local oncologist said not to bother about any reading less than 0.2, but I saw a VERY senior prostate cancer oncologist last week at the premier cancer hospital in Britain, and he said I should try and find somewhere that does super-sensitive assay down to the nth degree, as it seems your tests are.

But then he said, even if I find a minuscule rise such as you are experiencing, I should avoid any HT or RT treatment for as long as possible, if ever.

He said the next step would be some kind of scan, whether Choline or PSMA to see if any metastases are visible on one. He told me I would not die of PCa - he wasn’t Mystic Meg - and indeed the Sloan Kettering Nomograms confirm it, prognosticating a 98% chance of survival for fifteen years or more.

If I were you I wouldn’t worry, but then I’m not!

Best wishes for the future.

Cheers, John.

Edited by member 06 Nov 2018 at 15:29  | Reason: Not specified

User
Posted 06 Nov 2018 at 16:09

Barry

This is my story, but please remember I am 20 years younger than you.  My Gleason score was a 9, so my starting point was a bit higher than yours too.

Post prostatectomy PSA - 0.014, 0.015, 0.019, 0.014, 0.02, 0.023 - all in the space of a year.

My oncologist recommended a PSMA scan for which I had to pay £2588.  It was thought unlikely that they would find anything with such low PSA readings.  Well, they did, and it changed my treatment plan.  I've since had salvage radiotherapy (awful) and am on hormone therapy.

The problem with the forum is that whilst we can recount our own personal experiences, it is only your own medical team that can advise you on what to do.

On the controversy of the super-sensitive PSA test, I'm a total believer in them.  Had I been in a hospital that doesn't use them, they may well still be telling me that I'm undetectable.

Because of my starting point, I think it was likely I'd always have needed SRT and HT.

I hope my experience gives you food for thought.

Ulsterman

User
Posted 06 Nov 2018 at 17:26
You can click my picture and read my profile. My post op psa 3 1/2 yrs on is now nearing over 100 but I’m on zero treatment. I refused RT four times now as I’ve had two PET scans and they show zero spread. My Onco refuses to put me through HT and Chemo against my will when there is zero visual evidence of spread , even though the psa is soaring. Tbh I’m happy not being messed around with til necessary. All Oncos have their own methods but mine is very high up and feels my QOL is paramount at only 51 yrs young.

Good luck

User
Posted 06 Nov 2018 at 18:00
Tiny, tiny numbers and as commented by others, ultra-sensitive PSA testing has been discredited and withdrawn by many labs. However, you are not seeing miniscule fluctuations, you are seeing a fairly steady climb which could be indicative of stray clusters of cells left behind. They could just as much be normal PSA being produced in other parts of your body or by small sections of healthy prostatic tissue left behind (for example if you had nerve sparing, tiny bits of gland may have been left there). Some men produce more (healthy) PSA than others and your current reading is only slightly higher than the average woman that has just had an orgasm or that a baby is consuming through breast mil. So it is sensible for your specialist to want to see what happens in three months - the PSA may stabilise and settle into what is going to be your new norm or it may climb again in which case there is a good reason to conclude that action is going to be needed at some point.

As a comparison re normal 'healthy' PSA production, my husband has a PSA level that ranges from 0.09 to 0.11 across the year - usually the highest reading is soon after our annual France trip ... lots of cheese, cycling, red wine, sex and red meat seems to directly affect his levels :-/

If your PSA does rise again at the next test, but still in the steady way it has so far, this is classic for stray cells in the prostate bed which will mean salvage RT with hormones has a good chance of eradicating it. Cases where the PSA reading never goes below 0.1 are typical of undiagnosed mets / spread but that does not seem to be the situation you are in so there is no risk of it 'spreading' before the next test.

Another challenge to take into account is that even if the medics decide after your next test that there is reason to be concerned, the local CCG may not agree. The NICE guidelines define biochemical recurrence as a post-op PSA of 0.2 or higher, or 3 successive rises over 0.1 - that means that in some areas, they would make you wait until your reading gets to about double where you are now. In our case, that was two years post-op. Ulsterman is unusual in that he was offered salvage treatment way below that point but he also had a pretty bad pathological report post-op so I suspect that his consultant would have encouraged him to have salvage treatment even without the PSA readings.

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

User
Posted 06 Nov 2018 at 18:05
Amendment to above - I just looked back at your pathology and see that a) you had seminal vesicle involvement and b) were upgraded to T3 post-op at which point your surgeon was already talking about possible salvage RT in the future. In that light, it makes it even more likely that the rise is down to stray cells left in the prostate bed so very sensible of your surgeon to wait for another test in 3 months and then perhaps refer you to oncology to discuss next steps.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Nov 2018 at 14:59

Many thanks Chris, your story inspires me your one very brave Man.

Best Wishes

Barry

User
Posted 07 Nov 2018 at 15:07

Many thanks Lyn, once again your knowledge is inspirational. I am not sure whether to be more worried now or not! But hey ho I will sit in the "waiting room " for a further 3 months. I am due a CT scan for pain in the pelvic region soon, and am not sure if any of this is connected to pc. 

I hope people don't mind if I post results as kind replies are always welcomed and appreciated.

Best Wishes to all Fellow Sufferers.

Barry

User
Posted 07 Nov 2018 at 18:14
Not brave really Barry , and not directly opposing Onco either. He’s on my side. I have bipolar and reacted very badly to surgery and the side effects. My hospital stay ended up at a fortnight. All the signs show I’m a dead man waiting to happen , probably loads of micro metastasis tbh. But nothing shows anywhere and I love QOL more than everything. He knows that too. There will come a time but I’ll deal with it then. I was a healthcare assistant for a year and watched a man die rapidly from advanced PCa over 3 months. His sister said he had had every treatment in the book , and whilst it had extended his life , he had zero quality. He just came off the Abi in the end and let nature take its course. I know it’s not the same for everyone but I think further treatment will unsettle me mentally to a huge degree.
User
Posted 08 Nov 2018 at 08:45

Well I wish you all the very best life can offer Chris.

Best Wishes

Barry

 
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