Considering Tulsa Pro or Proton radiation (full gland)

Hi @jaygk, are you saying that increased testosterone level will produce semen or some fluid? I have no idea what my original testosterone was, just that it was 11 at the point I stopped ADT.

@jeffmarc, Never heard of Cowpers glands. I don’t know there was much fluid, but more than I expected which was none. I guess my concern was that the radiation treatment might not have worked.

@robertov You should get a PSA and total testosterone blood test at 3 months after the end of ADT, so about 3 weeks from now. That will tell you how your radiation worked and how you recovered from ADT. PSA should have been below .1 on ADT but it is common for it to increase up to .5 after short term ADT ends (as always lower is better). A study showed higher risk or recurrence if PSA bounced higher than .5.

And yes, if there was a little fluid it was probably the pre-CUM from the Cowpers glands (not treated). Almost everyone has dry organisms after radiation.

I am proceeding with more testing toward 28 IMRT sessions.
1) Prostox test
2) second opinion from Dr Epstein especially my single core sample of 3+5(< 5% of the 5)
; 8 cores of 3+3 and 1 core of 3+4(35% of 4). No cribiform; perinueral invasion present , 5.99 PSA, clean PET)
3) decipher testing of the 3+5 came back surprisingly low at 0.19 😀
4) PSMA PET scan was clean

After reading about the side effects of ADT ( even with the Orgovyx), if no pattern 5 is confirmed. ….with my low decipher ….I am considering no ADT.

For my #s, my research shows % of 10 year free metastasis is 85% with and 75% without. So adds about 10%. Going from 6 mo to 18/24 months only adds another 1-3%.
So 18/24 month I definitely will not do. On the fence about 6 months.

I have active sex life and just recovered muscle after rotator cuff surgery last year. I know it is a little risky but it is a balance of quality of life vs risk. Tough decision for sure.

Also. When I schedule …I requested to use the Barrigel spacer and gold fiducials. I feel the lower dose of 28 sessions and the spacer and targets will help minimize rectal/etc issues.

@jaygk
Six months of ADT won’t change your life, but may extend your life. Yes, your decipher score is low, But you do have a five in your Gleason score. Yes, you do want to hear what Dr. Epstein says before making final decisions, but in your case it may Give you a much longer progression free survival with ADT.

It reminds me of what Rick Davis said at the ancan.org Meeting last night. A friend of his was supposed to have 24 months of ADT, but cut it off after a year because he was running a big company and Didn’t want ADT to interrupt his being able to work. Within a couple of years it came back and he had chemo, and not much after that he died. Not doing the two years was instrumental in his death.

@jeffmarc Lupron is covered under Part B. (I had Eligard; fully covered under Part B.)

@jaygk Definitely don't believe any pathology with the 5% of any gleason score, they are notorious for doing that to cover themselves for lawsuits. You are doing the right thing sending it out for another opinion. I want to mention on that - I have gone to about 5 places lately figuring out what to do, still no decision though I am talking to Mayo about Tulsa again or radiation, at any rate every place re-does pathology. I have 5 differing scores from 5 differing places. Pathology is just not very consistent. I believe Mayos latest for me. Not sure why though I theorize my small lesion and sample sizes influence it, but I get hugely differing scores everywhere on pathology. Even you get one more opinion, there are more to be had, keep in mind 5 places for me and 5 differing scores. These places all vary hugely, some are in lawsuits and cover themselves at your expense, we really need imaging processing with good trained algo's bringing some order to pathology grading (that is not called AI it is called image processing, we did image processing for decades where I worked at NIH). I don't believe in decipher, cancer has 1000's of genes these guys use 22 and haven't added more in a long time. I would feel better if decipher tests say 487 or 982 or whatever genes, but 22 well that is inadequate, I don't believe it either way it comes out.

@bjroc
I am going to Dr Epstein as I understand he is leading pathologist for PC

Last year I sent my samples off to him for second opinion and there was general agreement.

The one 3+4=7(< 5% of 4) by my urology group came back 3+4(1% of 4 ) by Epstein …so pretty much agreement.

All other 11 positive samples agreed on the Gleason..although the % varied by +/- 5-15%

@jaygk I will keep you in the thoughts (&prayers if you believe in that) for lower gleason via new pathology grading. At least you have larger sample sizes but will hope things come out right for you. Over grading is pretty rampant, it is about lawsuits and money and so on. We are just patients, all we can do is pay for better opinions and so on.

Even on Dr Epstein he was at JHU, they kicked him out, it was a power grab and probably didn't bring in enough money or who knows, he is still one of the best.

Good luck.

Thanks.

To your point if it is actually a 4 and not a 5, that would even be better.

The only issue would be if one overtreats based on that high pathology.