You have to realize that if your PSA starts rising quickly they will put you right back on and you will not have any cancer spread. That will tamp it down again.

Sometimes they want you to get three month PSA tests. Request that they give you monthly test for the first six months. I’ve had monthly test for eight years and you do what you have to do to keep it under control.

At that point what you’re looking for is if the PSA rises what is the doubling rate? If it’s quick you go right back on ADT. If it goes to .02 and then takes six months to go to .04 It’s probably still worth waiting for the next few tests. Your doctor is the one that will be looking at these numbers and telling you what the best option is.

I know a lot of people with Gleason 9 that have done what you’re doing successfully for a year or more.

❝ Seems to me the side effects are worth taking vs my cancer increasing. But, we'll see what happens now.❞

That's been my choice so far, too, with stage 4b. On ADT+Apalutime since 2021, my cancer has remained castrate-sensitive (PSA< 0.01 on the ultrasensitive test) with clean scans, and I'm tolerating it well (normal bloodwork, heart in good shape, decent energy level, only very minor muscle and bone-density loss), so I don't feel very tempted to roll the dice and maybe have my cancer come back castrate-resistant just to avoid inconveniences like occasional hot flushes and gynocomastia. My oncologist concurs.

I'm not ruling an "ADT holiday" forever, but I need either strong evidence that it's suitable for metastatic PCa, or serious comorbidites that make staying on hormone therapy dangerous. So far, neither has emerged.

Im living this now

Gleason 9, PSA 40 July 2022

On degarelix/Lupron for a year. Also secondarily on immunotherapy prescribed for a concurrent small bowel cancer. Immunotherapy absolutely destroyed/cured bowel tumor and oncos erroneously thought it had done the same for prostate cancer.

Based on this erroneous belief, we ceased all treatment and I spent about eight months under the blissful fantasy that I have been cured of two cancers. Well, the prostate cancer came roaring back like a hurricane maybe someday I’ll post about the emotional impact of this whipsaw. Hint: it wasn’t small.

So I went back on ADT in July 2024 and just went off at on June 23 of this year

In between I had a prostate ectomy, but my surgeon did nothing with my lymph nodes that had lit up on a PSMAPET scan. Biopsy of nearby lymph nodes was clean as where my margins.

So anyway, my point is that I believe I have two cancerous lymph nodes that have never been treated yet. I just went off ADT and like clockwork. My PSA is on the rise. I asked my surgeon and my oncologist over and over about the failure to address the lymph nodes, and I never understand the answer

So already I’m confirmed for a recurrence and right now. I have absolutely no treatments going on for it. We’ll do another blood test on August 20. Not only for PSA, but for diabetes because God has a really twisted sense of humor

Beginning to worry that I’m castrate resistant and I guess I just can’t jump back on ADT like you jump on an off subway.

But if my case is illustrated in any way, your concerns are warranted. On the other hand, there are other guys who go off ADT and seem to be OK for months, but I don’t know anybody whose lymph nodes were ignored during surgery. Who had that outcome

In the bullpen, I still have radiation and immunotherapy. As much as I hate ADT and my man boobs, I’m channeling Joni Mitchell when I say you don’t know what you got till it’s gone. I view the fatigue man boobs, and tears as a small price to pay for the two or five extra years at ADT could buy me.