Starting ADT

Posted by damonk @damonk, Mar 5 9:20pm

Hi All,
My first post in the un-fun club. I'm looking for some advice on my next step. First some history: I was diagnosed in the summer of 24. The biopsy yielded T1, N0, M0 with a Gleason of 3+4. Two positive out of 13 sections. Seemed mild. I did the brachytherapy in Sept 24 and had been monitoring since. My PSA peaked at 10.8 just before the radiation then slowly came down. In Sept 2025 it reached 4.08. I was feeling good. Since then it started going up again. Last test in Feb 2026 was 6.6. I then got a PET. It showed both lymph and some small uptake in the bone.

I've seen one medical oncologist who is now recommending ADT with Eligard once every 12 weeks and a daily dose of Abiraterone and Prednisone. I'm wondering if others are on this regimen or if there are any other alternatives. The radiologist who did the brachy is not recommending any external radiation at this time and also recommends ADT.

This is my 2nd rodeo with cancer have survived thyroid cancer from 2006. BTW, I'm 62. I'm kind of freaking out because this one is more serious and the stats look depressing. I'm just looking for some guidance outside of the doctor office from people who have been in the trenches.

Thanks, Damon

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for beaquilter @beaquilter

Hey! Welcome to the "club" my husband got diagnosed a year ago when his PSA was almost 300! Then Gleason almost all 8 and 9s and psma scan showed all over his body! Lungs, lymph nodes, bones etc.
They said triple therapy and he refused at first! He'd rather die than be castrated! I cried and was angry that if I got breast cancer or something I'd cut them off or whatever is needed if it meant more years with the family..
He finally relented but refused lupron for different reasons and actually oncologist wanted him to start with firmagon first then lupron but my husband continued firmagon, later zytiga pills and Prednisone (he did some supplements for a while and it wrecked his liver but it got back to normal once he quit those) then over the summer he did chemo docetaxel and did very well with it.
Overall he's doing well, no sex drive but I told him I'd have no sex life either way!
He was tired from chemo but is back to normal somewhat now
His PSA is 0.2 now and another psma pet scan after chemo showed great improvement!!
It's scary though
Last month his PSA was 0.19 last week it was 0.2 so technically it went up 0.01 so we'll see what they say next month.
He exercises daily and eats perfectly and doesn't look like a cancer patient at all, no pain, the urge to pee all the time is gone but he doesn't sleep well because of hot flashes. Gabapentin helped with that and also his mood but now the PSA went up a tiny bit so he stopped that too.
It's all so scary. Hang in there

Jump to this post

@beaquilter You should not interpret 0.19 and 0.20 as different numbers. It might be difficult to get the lab to tell you their actual observed standard deviation at this level, but a rule of thumb is to assume repeatability is no better than plus or minus 10%. Which means if the true result is 0.20 a repeat test on the same sample could be as low as 0.18 or as high as 0.22. If testing is done every few months and results don't differ by more than 0.02 I would want to see at least three increases before assuming a trend.

REPLY
Profile picture for windrider354 @windrider354

@beaquilter You should not interpret 0.19 and 0.20 as different numbers. It might be difficult to get the lab to tell you their actual observed standard deviation at this level, but a rule of thumb is to assume repeatability is no better than plus or minus 10%. Which means if the true result is 0.20 a repeat test on the same sample could be as low as 0.18 or as high as 0.22. If testing is done every few months and results don't differ by more than 0.02 I would want to see at least three increases before assuming a trend.

Jump to this post

@windrider354 yeah but still disappointed that it didn't go down. So....

REPLY
Profile picture for beaquilter @beaquilter

Hey! Welcome to the "club" my husband got diagnosed a year ago when his PSA was almost 300! Then Gleason almost all 8 and 9s and psma scan showed all over his body! Lungs, lymph nodes, bones etc.
They said triple therapy and he refused at first! He'd rather die than be castrated! I cried and was angry that if I got breast cancer or something I'd cut them off or whatever is needed if it meant more years with the family..
He finally relented but refused lupron for different reasons and actually oncologist wanted him to start with firmagon first then lupron but my husband continued firmagon, later zytiga pills and Prednisone (he did some supplements for a while and it wrecked his liver but it got back to normal once he quit those) then over the summer he did chemo docetaxel and did very well with it.
Overall he's doing well, no sex drive but I told him I'd have no sex life either way!
He was tired from chemo but is back to normal somewhat now
His PSA is 0.2 now and another psma pet scan after chemo showed great improvement!!
It's scary though
Last month his PSA was 0.19 last week it was 0.2 so technically it went up 0.01 so we'll see what they say next month.
He exercises daily and eats perfectly and doesn't look like a cancer patient at all, no pain, the urge to pee all the time is gone but he doesn't sleep well because of hot flashes. Gabapentin helped with that and also his mood but now the PSA went up a tiny bit so he stopped that too.
It's all so scary. Hang in there

Jump to this post

Wow 300 psa I thought mine was high at 59. I was started on nubeqa and eligard shots which brought my psa down to 17. Encouraged by jeffmarc to see oncologist; started chemo had treatment and Psa has been undetectable. So if you need help there many on here to help and encourage you.

.

REPLY
Profile picture for asolidrock @asolidrock

Wow 300 psa I thought mine was high at 59. I was started on nubeqa and eligard shots which brought my psa down to 17. Encouraged by jeffmarc to see oncologist; started chemo had treatment and Psa has been undetectable. So if you need help there many on here to help and encourage you.

.

Jump to this post

@asolidrock
At one of the Mayo Clinic monthly meetings, the doctor mentioned that the highest PSA he saw was over 20,000.

I have heard a lot of people in the high hundreds and even thousands in the online meetings I attend every week.

REPLY
Profile picture for Jeff Marchi @jeffmarc

@asolidrock
At one of the Mayo Clinic monthly meetings, the doctor mentioned that the highest PSA he saw was over 20,000.

I have heard a lot of people in the high hundreds and even thousands in the online meetings I attend every week.

Jump to this post

Ate the Dr's able to help them being that high?

REPLY
Profile picture for asolidrock @asolidrock

Ate the Dr's able to help them being that high?

Jump to this post

@asolidrock
I know that people over 1000 were able to be treated without a problem. I do not recall the doctor discussing how well the treatment went for that 20,000 person.

REPLY

I sure hope they got help. We'll it's nice and sunny here in louisiana a little winsldy to keep the Temps and humidity. Hope everyone has a great day.

REPLY
Please sign in or register to post a reply.