High risk Decipher score, what now?

[Surfer33]

Hello, Im a 61 year old man, IIB, T2c, no mo, classified as unfavorable intermediate. I just finished my last day of 28 days of VMAT, ( total 70gy) ,last Weds day on May 15. Minimal SE so far. I also have 5 months in on ADT , Lupron, 1month, 1month , and 3 month shot. So I was feel pretty good , maybe give the MO 1 more month of ADT to make him happy and get on trying to heal. But my Decipher score , which I pushed to have done, also came back last week with a high risk score. I have an appointment with my MO tomorrow , I know he was recommending 18 months to 3 years with this on ADT.

My PSA was 15 in Nov 2022, 18 Jan 2023, back down to 15.8. at time of diagnosis May 2023, 21.44 Dec 5, 2023 ( but I think there was sexual activity before), and 27.71 about two week later on Dec 18 , 2023 ( but there was also lots of sexual activity because I knew I was going on ADT) so I'm not sure how accurate those results are. ( I know stupid me)

I guess I'm not really sure what advice I'm asking for. I'd like to be cured , but QOL is important to me also , with ED up there as something I'm very much trying to avoid. Heard the out comes for that aren't too good for anything over 6 months. I'm relatively lucky in that the Lupron SE are not too bad for me, and I'm still able to get erect and orgasm , but dry ( was also hoping I could till ejaculate for a least a short time before the RT SE kicked in). I did start low dose Cialis daily, 2 week ago, to try and keep things working.

I was thinking I'll get another 3 month shot and see how that goes , with maybe .... one year total?

I should also mention that If I didn't have that Decipher test done I would probably only be looking at 6 months total ADT.

Thanks

[Tall_Allen]

Sexual activity within 24 hours doesn't raise PSA that much. Your risk category is high risk because of that, even before your Decipher score. You may want to extend ADT to 2 years.

[Surfer33 in reply to Tall_Allen]

Thanks for the reply Tall Allen, so am I classified as high risk now , as opposed to unfavorable intermediate? And PSA can jump 6 pts in 2 weeks? Also I have a relatively large prostate at 60.5 cc . Also , within the two years on, is the cancer being killed or just put to sleep?

Thanks

[Tall_Allen in reply to Surfer33]

Hopefully, cured. High risk = GS 8-10 OR Stage T 3, 4 OR PSA>20

[Yokohama2023]

What was your Gleason score and positive core percentages? I probably was similar to you T2bN0M0, 2 cores 4+3, 2 3+4…only half of prostate compromised but PSA was close around 18. I wonder about the ADT as well, but had Brachy and LINAC booster. I chose 9 months of ADT and felt the adjuvant benefits might help. My understanding is that the ADT prior to radiation weakens the cells by starving them, followed by the radiation damaging the cancers DNA to inhibit cell replication, followed by more ADT to starve microscopic missed cancer cells to death…hopefully. Unfortunately I didn’t have the PSMA scan which may have provided more transparency..did you get you? Yes the ADT will mess with your libido for a while , most likely you will take half or 1 month for every month of ADT for testosterone to recover. It seems your doubling time was fast so you may benefit from the additional ADT.. this site has a lot of videos that may offer help. TA offers solid advice in here so depending on your Gleason, PSMA results if done, you should probably at least meet that or maybe half way. Good luck!

youtube.com/@thepcri?si=Umr...

[Surfer33 in reply to Yokohama2023]

Thanks fo the reply Yokohama, yes we are probably similar. Out of 10 cores , I had 3 positive , one 5%, 70% , and 85%. I did not get a PSMA either, but did get a bone scan and PET. My Decipher came back at .75 (high risk). I wish I had the Decipher done earlier , as it was ,I had to really push for it myself. I got another 3 month shot , so end of Aug. , I will have 8 months in in total . I'll have to see how many more months I'll do after that. How was your ED SE after 9 months?

[Yokohama2023 in reply to Surfer33]

I’m at the 3 months mark with no hormone injections so still a work in progress. No interest in sex but had a few dreams and stroked a couple of orgasms ..I guess at 3 months out not bad .. have a Cialis prescription to pick up at my request but haven’t done so yet. A lot of working out which I think is helping . I think having the dreams is a good sign …! Orgasms are dry.. but a minute or two later some sperm comes out strange and odd . I guess something is better than nothing .. haha.

[Surfer33 in reply to Yokohama2023]

Ha, yes , something better than nothing. I've had a couple dreams while on ADT, and still think about sex . I'm not sure if thats a good thing or bad on ADT, seems a bit counter intuitive . Thanks.

[Yokohama2023]

Definitely a good sign.. you’ll probably notice a big change once you stop after 3-4 months. Be strong and and don’t sweat it .. months will go by quickly and soon you’ll be back where you want to be. I’d make sure some adjuvant ADT is taken to nix any stray dying weak PC cells. Take care.

[Surfer33 in reply to Yokohama2023]

Thanks, ya, it's probably 12 months ADT for me , maybe a lit bit more.