I don't want hormone therapy again: What are my options?

Welcome and so sorry you had to join our group. I was diagnosed in May of last year, Gleason 9 and already metastatic. Prescribed Orgovyx/Nubeqa and IMRT x 20. Unfortunately, my PSA bottomed out at 0.19 and started climbing and I became castrate resistant after about 6 months. My next step is chemo. Did you have a PSMA PET scan? Was it contained in the capsule? Did you stop Orgovyx with Drs. advice or on your own? One suggestion is that I would not wait until October for a PSA test. Do it now. Its already been 3 months since you stopped ADT.

There are multiple options for ADT. I’d focus on finding a top-tier GU Medical Oncologist who is familiar with all options. If you don’t already have them, I’d also make sure to get a robust panel of genetic tests, both Germline and Somatic. The days of one size fits all are over (or should be).

Make sure you get both PSA and total testosterone tests. PSA should go up a little when testosterone returns. For RT recurrence is 2+ nadir so 2.14 for you. The good news is that the least effective months of a 2-year ADT treatment are the last 6 so even though you did 71% of the time you probably got about 90% of the benefit. At recurrence you need to talk to your RO about salvage treatment such as SBRT, Cyro, etc. to the prostate. If it metastasizes outside the prostate than any spot that shows up on a PSMA PET scan can be treated with SBRT. For the first year off ADT monitoring with PSA is usually done every 3 months; if no issues than every 6 months for the next 4 years.

Instead of ADT, If your cancer does come back annd is aggressive, you could use the estradiol patch, which works just as well as ADT, but has many fewer side effects. Check the estradiolinitiative.org For more information. There was a clinical trial in the UK that showed it was just as effective and many doctors are allowing their people to switch to it. You’re gonna look up the patch trial for more information about that.

Unfortunately, at this time, there are not a lot of other options for somebody with the Gleason nine. You can go on an ARPI but it blocks testosterone and can cause some of the problems you were having.

Jeff hit the main options. ARSIs/ARPIs block the cancer cells from receiving testosterone but still allow your body to produce it for other purposes, but as he mentioned, they have a number of side-effects of their own. And Estradiol is emerging as an alternative treatment, but it's contra-indicated if (like me) you have a history of any kind of serious blood clots.

I'm currently an ADT + ARSI "lifer" because I have stage 4b, but there's a major trial underway to see if it's safe for people like me to drop the ADT and stick with *just* the ARSI (Apalutamide in my case). I would still get many of the benefits of testosterone that way, if it comes back at all after 5 years.

@northoftheborder
I was just speaking to my oncologist about this an hour ago. She was saying that while the Lutamides do suppress the testosterone from working it causes your body to produce more testosterone because what you have is not working.

While we’re talking about ARPI’sand ARSI’s, abiraterone Is considered one, Though that doesn’t seem to be quite right. But it knocks your testosterone down as low as possible, by suppressing it from multiple places. Quite different from the lutamides.

@mjp0512 The tumor was still contained within the capsule, meaning it hadn't metastasized. However, on June 16, my PSA level—which is checked monthly—had risen from 0.18 to 0.3; this increase worried me, so about a month later, I asked my GP to have the PSA level measured again. It turned out the level had dropped back to 0.14—the lowest reading recorded throughout the entire course of treatment. I should also mention the rise in testosterone: it went from 0.4 to 2.6 during that month. I have to say, this did reassure me somewhat, which is why the PSA and testosterone measurement on October 22 will be important.

@mjp0512 The tumor was still contained within the capsule, meaning it hadn't metastasized. However, on June 16, my PSA level—which is checked monthly—had risen from 0.18 to 0.3; this increase worried me, so about a month later, I asked my GP to have the PSA level measured again. It turned out the level had dropped back to 0.14—the lowest reading recorded throughout the entire course of treatment. I should also mention the rise in testosterone: it went from 0.4 to 2.6 during that month. I have to say, this did reassure me somewhat, which is why the PSA and testosterone measurement on October 22 will be important.I made the decision to stop myself.

@jeffmarc I don't want any ARPIs, ARSIs, or other chemical drugs in my system—they all have side effects and I want to get away from that—but anyway, let me just wait and see what the results are on October 22nd.

It's not a common choice, but castration is an option if you can accept it.