← Return to Newly diagnosed with prostate cancer and still gathering information

Discussion

Newly diagnosed with prostate cancer and still gathering information

Prostate Cancer | Last Active: Apr 22 2:46pm | Replies (115)
Comment receiving replies
@jeffmarc

You say Gleason 7-9. No such thing, if you have one 9 you are a Gleason nine. As a Gleason nine your chance of having reoccurrence is very high. Dropping ADT because of side effects may sound great, but it can make your life very short, and Reoccurrence very soon.

Is your PSA rising? I know people with Gleason nine that have gone on ADT vacations when their PSA was low, due to being on ADT, only to find that they have multiple metastasis within a short time after the ADT vacation.

There are a number of people in this forum that have had nerve sparing surgery and it did work. Even had one person report that they only were able to keep half their nerves, but still were able to get an erection. Results will vary!

Good luck!

Jump to this post

Replies to "You say Gleason 7-9. No such thing, if you have one 9 you are a Gleason..."
laccoameno5 | @laccoameno5 | Apr 8 3:12pm

My Gleasons were 7 through 9 Hope this makes it clear. I dropped my ADT twice because of the HORRIBLE side effects.
SW

VIEW AND REPLY
retireddoc | @retireddoc | Apr 10 8:52am

We have maybe discussed this before; can't remember all of the various posts.

RP at age 68 with G9. Initially no evidence of spread but 6 months later PSMA PET revealed solitary met at T8. Had SBRT. Another 4 months rapid doubling of PSA with new pelvic node on repeat PET. Sought consultation and treatment with very experienced MO at Johns Hopkins. Had triple therapy and whole pelvic radiation 2 months after finishing chemo. My PSA went undetectable after 2nd chemo cycle and has stayed that. My MO discontinued the Lupron after one year; the Darolutamide was discontinued when I finished the chemo (3 months on it). My T never recovered so 6 months ago my MO put me on TRT under guidance of an endocrinologist.

The difference on my sense of well being on T is night and day. I suffered the usual side effects of ADT therapy/low T including anxiety and depression. When I questioned my MO about TRT in the setting of oligo metastatic disease he said I was a 70 year old living in a 90 year old body and I needed the T. He said the triple therapy had killed the aggressive clones as evidenced by > 2 years of undetectable PSA. He said there was a 50% chance of recurrence but if it did come back it would be manageable. Of course, every case is different. TRT isn't for everyone.

BTW, I had not had an erection since my RP in 10/21. a couple of months on the TRT and I started having spontaneous erections. Some of the penile shrinkage has reversed. The testicular shrinkage is here to stay with TRT.

VIEW AND REPLY