ADT. Afraid of it

I'm lucky that so far I'm not diabetic, my bone density is only slightly reduced (we assume, since there wasn't a pre-ADT baseline), and my heart is doing well (based on a half-day workup at the Heart Institute).

But since I'm an ADT "lifer", obviously we have to watch all of those closely, and if one starts becoming a concern I might be forced into the same tough choice about TRT: there's no point beating prostate cancer only to die of heart failure.

Sorry to hear of your issues with Androgel.
If you take a look at my earlier post, I researched the topic for several months before proceeding with TRT, including consultations with multiple ROs and Urologists. Indeed, we are all very different and the conclusion was that, in my case, TRT that was caused by ADT (4 months), was an effective way to treat my slow recovery (more than one year) from Orgovyx. I also indicated that my PSA/T are tested quarterly and reviewed by my doctors. Additionally, the fertility specialist urologist also ordered:
ESTRADIOL, ULTRASENSITIVE, TESTOSTERONE, FREE & TOTAL, IMMUNOASSAY, COMPREHENSIVE METABOLIC PANEL (BMP, AST, ALT, T.BILI, ALKP, TP ALB); LIPID PANEL (INCL. LDL, HDL, TOTAL CHOL. AND TRIG.), HEMOCRIT

I was also very afraid of starting ADT. I'm a Gleason 9, and that makes me accept ANY treatment. ADT sucks, but brother, we solder on. Good luck.

I am almost six months off Orgovyx now. My T was ~650-700 pre-treatment. Two months post-treatment it jumped above 360 which I took as a good sign, but it's been dropping ever since and is now below 300 and into the "hypogonadism" range and I'm starting to feel all the bad effects again, though not as bad as when my T was undetectable.

The worst is that my post-treatment DEXA scan shows full-on osteoporosis which I didn't have pre-treatment. My doctor wants me to do a once-a-year injection of Reclast but I looked at the reviews and the number of people reporting awful side effects (fevers above 103 lasting for weeks, unusual broken bones, jaw necrosis, etc.) has completely turned me away from that idea.

I had a full workup and my Estradiol was also very low at 6 (10 is normal for men), which I think is what's causing my mood to sour again. My FSH is off the charts high, which means my brain is yelling at my body to make testosterone. I'm going to go see an endocrinologist unaffiliated with my cancer center to try to get to the bottom of this.

The oncologist who prescribed Orgovyx said he is "surprised" that I haven't fully recovered but said it can take up to a year. I have no idea if he is being truthful or just dangling another carrot--I was misled about ADT prior to treatment including NEVER being told that half of people who take it don't recover.

It wasn't just the medical risks of prolonged testosterone deprivation. It is the over all sense of well being with normal levels of testosterone. And my libido is completely back. This may not be as important to some guys but for me it was.

Again, in selected men with undetectable PSA, coming off ADT and possibly being treated with TRT if T levels don't rise is becoming more accepted.

I'm 2.5 months in and it isn't as horrible as I thought it would be. Gained some quick weight over the past 2 weeks that needs addressing. Appetite went bonkers. Dinging my short memory. No hot flashes (yet) and mountain bike riding our local trails 5-6 times a week. I've heard exercise is very helpful. Best wishes on your journey.

I've heard after 3 years of no BCR? I would rather have no libido than another BCR occurrence.

That's why it's a personal decision in consultation with your medical team. The point is that TRT is now considered a reasonable medical decision in selected patients, even with a history of metastatic disease. Best of luck to you in fighting this disease.

Just another point of view from a recent interview (1/25) of Dr. Khera who treats prostate cancer patients and individualizes TRT:

"The second paper [concerns data from a recent study by Flores et al]. This is a large series looking at almost 5200 [patients] who underwent radical prostatectomy [RP] and had groups grade 1 to 3 on RP pathology, of which 198 patients received testosterone therapy. These authors found there was no difference in biochemical recurrence in men receiving testosterone vs those men not receiving testosterone after radical prostatectomy. They also noticed that the men who received testosterone had a much lower risk of biochemical recurrence, although it was not statistically significant."

Research regarding TRT in men with a history of prostate cancer is ongoing.

That’s a mind blowing study, doc…turns everything on its ear. One point though - did the paper mention the Gleason scores of the 5200 men?
I mean, if they were all 3+3’s and small tumor 3+4’s with low Deciphers, I could really get behind it.
But then there’s you and your aggressive case- now on TRT!!
It seems that the triplet therapy you endured really worked for you in not only beating down the cancer but possibly “curing” (we don’t use that word!) it?
Very happy for you!
Phil