PSA what should I expect

Brian, I’ve been reading your posts and am genuinely amazed by your tireless efforts to help others. You deserve real commendation. I grew up in Northern Ireland—though I’m not originally from there—and as some of my schoolboy friends would have said in praise of someone’s achievements: “You’re some mon!” The full weight of that compliment is best appreciated when spoken in a Belfast accent.

Hello ValBe85458 

Thank you for your post - it's very much appreciated. I do what I do because 4 years ago with a new diagnosis I was clueless as to Prostate Cancer (someone else gets that), and my Macmillan nurse suggested I join the Community.

I was welcomed by many and helped with my initial diagnosis and made many friends (some who are still here - you know who you are). As time went on I started helping others and over 2 years ago made the jump to do the formal volunteer training and as they say the rest is history.

My training helps me work not just on this group but on other groups too - I also do "bits" away from the Community, meetings and helping with publications.

I do it because I can, and I have the time to help others, it's not easy and sometimes I come across some vey sad posts however training kicks in and I try my best. Yes I have received some awards etc but I don't do it for those - none of us who volunteer on the Community do! You may find my latest one here:

Macmillan-moments-recipients.

Doing what I do keeps me active at 70, I have my own journey ongoing and I still use the Community for support. To be honest if I can make a difference to just one person - then it's all been worthwhile.

So thanks again for your support - it makes it all worthwhile.

Kind Regards - Brian.

^^@ Brian and Valbe, sorry, I wasn't decrying psa as a diagnostic tool, only commenting that it CAN, if rarely, be misleading in the case of unusually aggressive disease. 

Summary of a number of studies:

 "Low PSA (Prostate-Specific Antigen) with high-grade prostate cancer (like Gleason 8-10) is a concerning, aggressive form of the disease, often indicating rapid progression, poor response to treatment (especially Androgen Deprivation Therapy), and worse outcomes because the tumor cells are poorly differentiated (dedifferentiated) and produce less PSA, despite their high malignancy. This "discordant" presentation suggests unique aggressive biology, with low PSA not always meaning good prognosis in high-grade cases,....."

Given what PSMA PET found one would expect my BCR psa to be significantly higher than it was/is. Rare for metastatic to match with a psa <10. My original Gleeson was 9 and once psa started rising the doubling time was approx 4 months. 

I therefore do not expect HT and doralutamide to be effective for more than 12 months.

Dave.

Dave,

Not at all, not at all, I am a tetchy old bugger at the best of times. Ironically I may be that man you refer to. I have a Gleason 9 but my PSA was 10 at its highest yet 24 out of 32 cores in my biopsy were cancerous. I responded very poorly to initial ADT and my PSA only reduced significantly with radiation. I suspect that I have a bad one and I have always been noted for my intuition. I actually posted my original post because I suspect that mine will in time come back with a vengeance. Which is a bugger, for despite trying to be one of the good guys I have a history of drawing a short straw. What can you do? I think Brian encapsulated it when he said that it is the best that is available, but I hear you brother. Stay safe and remember that even when you travel light, always carry a toothbrush and a quarter bottle. 

Hello Dave (Carl28 (5aa97c53920c4078aa11fdbc45285983)) 

Yes, I am fully aware that PSA is only an indicator and at the moment along with the MRI and biopsy it's the ONLY diagnostic tool in the toolbox. You can discount a PSMA-PET scan at £2500 per pop on the NHS - it's never going to happen.

i suspect your 

Carl28 said:

Summary of a number of studies:

to be AI or ChatGPT generated therefore there no quantification for the statement as it can be drawn from many unquantified sources.

Yes i am aware that high Gleason can be resistant to HT - don't forget I am a Gleason 9 (5+4) but Decapeptyl worked for me for 3 years before my biochemical recurrence and it's working again now I am back on it.

I think you have had a poor personal experience with the NHS and that you are one of the few who slip through the net with a low PSA and a spread. The issue is the NHS treat everyone with a "one size fits all" attitude and as I have said many times, we are all different and need to advocate for ourselves.

Another point is I do think a positive attitude can and does make a difference and in both your profile and post above you doubt you don't appear to have any faith in either your team or medication.

Life for us all is precious and short - try and live that life as I do to the full.

Best wishes - Brian.

Hi Brian. All noted.

"Decapeptyl worked for me for 3 years before my biochemical recurrence and it's working again now I am back on it."

My results also all satisfactory by RT standards while I was on decapeptyl. Restarting certainly done a good job at rapid psa reduction. I am hoping that given a few months and with added doralutamide will work again. 

" I think you have had a poor personal experience with the NHS and that you are one of the few who slip through the net with a low PSA and a spread. The issue is the NHS treat everyone with a "one size fits all" attitude and as I have said many times, we are all different and need to advocate for ourselves."

Mainly my GP rather than NHS as a whole! Yes I had to advocate for psa level to be considered "not normal".

"Another point is I do think a positive attitude can and does make a difference and in both your profile and post above you doubt you don't appear to have any faith in either your team or medication."

Positive? Well, I have accepted treatment FOR NOW. I have faith that oncology will do its best, within the limits of the medication available! But it is clear that last resort treatments will seriously impact on the quality of my life. I have no wish whatsoever to prolong living for the sake of it. In no one's interest - not mine, not my kid's, not my partner's and not society's.

Rationality and fact rule my philosophy.

Thank you for your thoughts, Dave.

I don’t think this discussion is productive anymore. I’m here to focus on constructive support, so I’ll leave it there. At some point all of us are facing mortality, but my understanding is that this forum is about coping, sharing experience, and helping each other live as well as we can — not giving up.

Hi ValBe85458 , in the 2 years I have been participating on this forum, most of the time I think it has been supportive and caring and I hope that continues.  Since my diagnosis I have tried to stay positive and I really believe that helps your body, but even if I am wrong it makes ME feel better.  
The PSA argument is interesting.  PSA is both an accurate diagnostic and a useless measurement.  Across a group of men, their relative PSA’s are meaningless. I have a friend who’s PSA was several thousand on diagnosis, but after all the tests no spread was found yet someone with a PSA of 6 might have widespread metastatic cancer.  However, at an individual level PSA trends are very valuable and small increases can be indicative of something happening.

We all react and respond differently to treatments, but one thing seems clear that the range of tools available to oncologists is fairly substantial.  Indeed there appears to be evidence that even if a treatment has failed once, it might be more effective again later on (presumably if the PCa has mutated).  I have been on HT for over 8 years, it failed a couple of years ago and I had additional treatment but remaining on the original HT it appears to be still working again. I believe that the science is getting closer to finding a cure (maybe for some) and I keep saying to my oncologist, just keep me going until a cure is found!

Hello ValBe85458 

I understand your feelings entirely. We are all here for support - I have been here since 2022 having nearly died at Christmas 2021. When I joined the Community the support was amazing and indeed it was so good for me I have chosen to stick around and to put back in what I have had out.

I personally will offer my support to everyone whatever their circumstances are - yes I might not agree with their views - life is very precious, and I will do what I can for any Community member. Sadly I can't change someone's views on life.

I move on and yes doing what I do I see grief, sadness, very personal emotions and death. I am not hardened to it but I have support from the Community members, the Community Team, my fellow Community Champions and my family BUT I do see so much success where we help people and they move on.

Do stick with us, ignore any negative comments - the support here is amazing and by pulling together, being positive and working through our own issues by sharing the positives (and negatives sometimes) as a group - we can move forward.

Best wishes - Brian.