Next step: input requested please - Prostate Cancer N...

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Next step: input requested please

AMT4566 profile image
20 Replies

Hi all,

I have been under Active Surveillance since August 2023. GS 3+3 according to JH (second opinion). You can see the detailed history of my case in my profile

The latest results show PSA 6.93 and MRI result PI-RADS 3.

I am seeing my radiation oncologist in a week or so. Based on my history, and latest PSA and MRI results, I would appreciate if you can share your thoughts and let me know what the best next step would be in my situation. Thank you very much in advance. Your input is highly appreciated.

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AMT4566 profile image
AMT4566
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20 Replies
Justfor_ profile image
Justfor_

How old are you ? Any lab counts of T and DHT? Lipid panel labs?

AMT4566 profile image
AMT4566 in reply toJustfor_

I am 58. T counts within normal range but on the lower side. LDL around 85 and Lipid results all normal. Hope this helps, thank you

Justfor_ profile image
Justfor_ in reply toAMT4566

You can try for 6 months the mildest hormonal intervention available. Avodart. It will rise your T and lower your DHT which is the prefered nutrient of the cancerous cells. Have labs before and after and check if DHT declines in absolute terms. In percentage it will decline either way as the total T will go up. If you are in the US the Avodart box will have a black label claiming that it increases the risk for more agressive PCa. In the rest of the world we are concidered smart enough to know that it will lower the PSA and adjust the "magic" number of 4 accordingly. It is not a "cure" of any short. Only making tougher for the cancerous cells to source their semi-baked energy supply. It will only buy you some extra time compared to doing nothing. With an ADC of over 1000 you are not for any definitive treatment IMO.

AMT4566 profile image
AMT4566

Thank you. Is any biopsy or targeted biopsy warranted? That's my main question at this point. Any point of waiting before having one?

Justfor_ profile image
Justfor_ in reply toAMT4566

If the question is directed to me, my expressed opinion is that the multi parametric MRI that you periodically take combined with a PSMA PET/CT provide more consistent staging info than any biopsy that suffers a higher ambiguity risk. But, here you will hit the stone wall put up by urologists defending their professional practices. They will not surrender them to radiologists. On top of that, insurance will probably deny reimbursing the PET scan. So, it is hardly an option.

AMT4566 profile image
AMT4566

Thank you very much again for your valuable insights and time taken to address my case. In the absence of PSMA PET/CT, would you think a combinations of PSA measurement and MRI in say 6 months would be adequate with not a lot of risk? What are your thoughts on that route. For your information and if that may help, my AS is being followed up by a radiation oncologist and another prostate cancer oncologist at UCLA. The other question I have is: given the small size of the lesion and the state of my case, do you think PSMA PET/CT detection would be highly reliable and still the best to detect in a meaningful way?

Justfor_ profile image
Justfor_

Tough question! I am a retired engineer and as such a 95% probability, which in medicine is assumed as a relative certainty, is in-admissibly risky in my profession. I feel comfortable with 3 or better 5 nines (99.9% or 99.999%). To do my best, I calculated your PSA doubling time that came out to almost 3 years (35 months). Certainly not bad, but also not 99.9% reassuring. The nitty-gritty is that the the log regression coefficient is a bit higher than the linear one indicating that the PSA rise is governed more by PCa than by benign sources. If it were the other way round I would agreed with you that it is ok to wait for another 6 months doing nothing. If it were for my shelf I wouldn't. Sorry.

Regarding the PSMA PET/CT, the scenario to wish for is to detect nothing, not the opposite. MpMRI is good for looking inside the prostate gland. Outside it, i.e. lymph nodes and seminal vesicles, when MRI registers them as invaded the disease has already progressed very-very much. There are a number of prostatectomy cases dubbed "persistent PSA" which is just that. PCa had escaped the gland but this was made evident after its removal.

AMT4566
AMT4566 profile image
AMT4566

Interestingly, I am an engineer too and I do understand where you coming from. Thank you so very much again for your analysis and insights.

MauiJef profile image
MauiJef

Well I'm also doing AS, diagnosed 2/23 at 55....came back with 3+3 and 3+4....talked with both surgeons and radiologists from City if Hope, UCLA, Providence and Cedars. All are ok with continuing AS and doing PSA tests every 3 months to monitor. My last was 4.7

There have been a lot of people on here who have given good/thoughtful advice to me throughout my journey and it's helped. But ultimately it's your decision and I'd continue to talk with as many specialist as you can to get all of your questions answered and get a comfort level as to how you want to proceed. Since everyone is different it's hard to tell you "your next steps" Good luck with your journey. Wishing you the best.

AMT4566 profile image
AMT4566 in reply toMauiJef

Thank you for your comments.

Laguy01 profile image
Laguy01

to start off, stay positive, pray and hang in there, God Bless. I read thru your profile, a lot of info. I can tell you my experience and give you my thoughts. Did they do a PSMA PET scan? If not ask about it. I did Proton therapy but IMRT has shown excellent outcomes. My treatment was for 28 days, Monday thru Friday. It was a easy process. I was getting up a lot during the night to pee (3-5times). It will lower immune system, i ended up in the hospital for 5 days due to picking up a gram negative bacteria (i think from raw chicken liver, feeding my dog). It has other possible side effects you can read about but mine was minimal. I am waiting on follow up scans on March 4th, 2025. I am also on Lupron shot every 3 months, i am taking Abiraterone (zytiga) every day, 500mg. (I started out with 1000mg, but it made my liver enzymes go way up, have doctor do blood work to keep a eye on liver). I am taking Prednisone, 5 mg a day.

The medicines(zytiga, prednisone) is the worst part. It can create fatigue, lack of sexual desire( i still can get an erection but my orgasm is mostly dry and small). They have said they want me on that for 3 years but I will make that decision at s later date. They have a lot of side effects to include heart and bone issues. The doctors told me to get in the gym and lift weights to help with muscle lost, fatigue and bone issues. I have noticed a decrease of strength. It is day by day. I hope this helps. Good luck. Any other questions please ask.

AMT4566 profile image
AMT4566 in reply toLaguy01

Thank you for your comment and all the best with your treatment. My question is mainly doing another biopsy or not at this stage and possible more effective alternatives. Possible treatment (or not) will have to come and be addressed later.

Hiker64 profile image
Hiker64

if you haven’t had one I would consider a Decipher test on your biopsy samples to determine the aggressive and potential for metastasis.

AMT4566 profile image
AMT4566

Thank you. Decipher test has been done and is 0.27 which points to the lower side. Still the question of biopsy or no biopsy remains.

Tall_Allen profile image
Tall_Allen

Looks good to me to stick with AS.

AMT4566 profile image
AMT4566 in reply toTall_Allen

Thank you very much for your response. I would appreciate if you would elaborate a bit more in terms of your reasoning. When you say stick with AS, does that include a biopsy as the next step, or else no biopsy and PSA+MRI in 6 months in-line with what has been done so far?

addicted2cycling profile image
addicted2cycling in reply toAMT4566

2015 right half had GL10 was cryoablated, left half with 6/7 had Focal IRE on the spots

2018 had PSA rise - Axumin Scan - 3 spots in left half that were BIOPSIED as 6/7 NOT location of previous and again Focal IRE

2020 PSA rose - had PYLARIFY and MRI with nothing showing = ???? - did nothing

2024 PSA shot up had PYLARIFY with 3 new spots again left side, BIOPSIED results were 3 individual cores out of 45 core samples were minimal % 3+3 = Watchful Waiting.

AMT4566 profile image
AMT4566 in reply toaddicted2cycling

Thank you. I am not familiar with focal IRE. Is is considered an effective treatment?

addicted2cycling profile image
addicted2cycling in reply toAMT4566

PCa related info for IRE - believe used more in Europe

pubmed.ncbi.nlm.nih.gov/176...

Tall_Allen profile image
Tall_Allen in reply toAMT4566

Whatever makes you more comfortable.

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