What is the standard of Care for PSA Checks after 41 months of <0.01, with high decipher score, EPE and + Margins?

[RJAMSG]

Also, if PSA becomes detectable do you radiate all of the prostate bed and lymph nodes, and use hormones? I was told by RO & Urologists if it ever becomes detectable to do early salvage, but no mention of where to radiate or if hormones should be used (I know new information comes out all the time). Thanks for any input!

[Elbers123]

prostatecancer.news/2018/10...

A gentleman on this forum previously recommended this study. I found it helpful.

[RJAMSG in reply to Elbers123]

Thanks

[Tall_Allen in reply to Elbers123]

Updated here:

prostatecancer.news/2022/05...

[Elbers123 in reply to Tall_Allen]

Thanks

[RJAMSG in reply to Tall_Allen]

Excellent, thanks!

[Tall_Allen]

There is a balance between the anxiety of too-frequent PSA tests and the anxiety of too-infrequent PSA tests. There really isn't a SOC so much as whatever makes you comfortable.

[RJAMSG in reply to Tall_Allen]

couldn’t agree more, probably move to Q 4 months, Dr. Spratt said Q 6 months at this point but 4 seems safer right now.

[Jmr11820]

I too had surgery 10/2019. Post surgery pathology was 4+3, EPE and positive margin. Grade at margin was 3+4. At 6 weeks my OSA was .01, but at 6 months post RP was .03. Did DECIPHER which was high risk. Based on the small increase in PSA, but low number, and high DECIPHER, I had RT but no HT. I’ve been .00 since then. To your question, we started doing 6 month checks a year ago and will continue that until 5 years post surgery, then will check annually. This all assumes PSA stays . 00. I have another check in May and get extreme PSA anxiety as Allen alluded to. Fingers crossed and lots of prayers. You are in excellent hands with Dr Spratt. If you’re on Twitter, might follow him and other PC gurus, including Allen. Pretty informative.

[RJAMSG in reply to Jmr11820]

Thanks for that and we can never get enough prayers! I used to be on Twitter, I may go back. I’m followed at UF in Gainesville, FL. I reached out to Dr. Spratt with my medical information and he responded with recommendations.

[Jmr11820 in reply to RJAMSG]

Did you reach out via a formal online consult or other means? I agree with you that in cases of very low PSA he seems on the fence about HT. At least he was 2 years ago.

[RJAMSG in reply to Jmr11820]

Actually by email LOL, I think his stance on HT is <.5 no real benefit but possibly harm; I know he is big on decipher so not sure if he has changed his opinion. I almost did Adjuvant, but at that time it was when all those trials were finished and results showed esrt was similar to AR and I wanted to heal more and then the <0.01’s kept coming, so I decided to wait.

[Jmr11820]

hopefully we’re both good. my decipher was .83. It was a weird deal . After weeks of waiting they finally said the tumor sample sent by pathologists was too small. So they used some of my original biopsy tissue with disclaimers on my report. As the Decipher database grows so might your risk assessment percentages. My urologist asked them to redo the numbers on my sample and they again said they didn’t have enough tumor.

[RJAMSG in reply to Jmr11820]

I was shocked (don’t know why) when mine came back at .88. How would you know if it decreased/changed? I had a 2nd opinion done by Dr. Epstein on my pathology he graded it 3+3 at margin and <1mm +margins, UF did not grade margin ca and had me at <3mm, UF graded my 4% (3+4) at 10% and Dr. Epstein graded it 20%, when I spoke with him on the phone he said it comparable.

[RMontana]

…you r doing really good in your recovery. I would not worry with that PSA level. You also need to look at doubling time which is more important than the PSA level. Understand that once you do radiation your chances of having normal erectile function are very low. If you do move to radiation, you should consider moving to an implant quickly. You are never going to get spontaneous erections after that. That is the one regret that I have as I had exactly the same background as you. But I had a maxed out decipher score of 0,97 and EPE. But my PSA at six weeks post surgery was 0.13. I moved immediately to salvage radiation, which probably saved my life. It also ended my ability to have spontaneous erections. I should have moved to an implant much sooner. But you’re doing really good right now. Here is my history if it’s of any use. Good luck.

healthunlocked.com/active-s...

[RJAMSG in reply to RMontana]

Thanks for the information and your experience!

[j-o-h-n]

Dr. Spratt could eat no fat, his wife could eat no bone.

So after dinner together he laid her when they got home.

(my kind of doc)....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/11/2023 7:51 PM EST

[RJAMSG in reply to j-o-h-n]

Haha 😊