Is PSA rise inevitable after hormone therapy?

I'm interested in the IRONMAN study. Where can I find out about it?

IRONMAN is a tracking registry — the Cancer Centre enrolled me right after diangosis (after asking permission). It involves a few extra blood tests and filling in an online survey every 3 months on my side, and extra reporting on the Cancer Centre's side:
https://ironmanregistry.org/
In Canada, we participate through the affiliated TrueNTH initiative.

The main implication for me is that the Cancer Centre has to keep testing me and seeing me every three months as part of their side of the committment (and do a little extra paperwork — they have a guy who manages studies full time). Otherwise, my oncologist said I could have dropped to 6-month monitoring, since my remission has been stable for a few years, but I prefer 3-month intervals anyway.

Apparently I could also get free parking for my hospital visits related to the study, but I've never asked (and prefer public transit anyway, since it's fast and easy in my situation).

My situation is almost identical to yours but I’m a little further along and will always have the same question. Gleason 9, surgery in 2022 and started ADT early in 2023 when PSA began doubling quickly and metastasis discovered in lungs only (scattered nodules in both sides). I opted for doublet therapy (darolutimide and Lupron) and no chemo. PSA went undetectable pretty quickly and stayed on it for 12 months with all the typical effects. I was worried about longterm side effects of ADT and decided to try intermittent therapy and have been off ADT for 12 months with undetectable PSA but monitoring it on regular basis. I’m hopeful, but realistic about where this will go but right now feel pretty good. I had completely changed my diet and I exercise regularly which I think is important whether on ADT or not. I know I’m early in the journey but with my similar situation maybe it provides a glimmer of light for your question.

Yes, we have uncanny similar situations, especially given the somewhat rare metastasis in only lung nodules.
A few questions...
1. I assume you are still taking Darolutamide/Nubeqa? If so, have hot flashes subsided at all after stopping ADT? Other side effects lessened?
2. How often are you monitoring PSA?
3. Did your oncologist ever encourage triplet therapy by adding chemo(ie docetaxel)? Current research finds the triplet as "gold standard", but waiting for evidence of other metastasis currently trumps chemo for me right now.
4. Any changed diet tips that stand out as "game changers?" Night sweats are interfering big time with my sleep.
5. You say you are "hopeful, but realistic about where this will go" likely meaning you're waiting for the inevitable next shoe to fall? My Gleason 9 looms heavy and I wish I knew where it's all going and how long I may have left on this journey. UGH.
6. My oncologist has scheduled a nuclear full body bone scan in August - likely thinking the spread may be identified in bones next, where it usually first appears. Any scans for you in the future?
I apologize for all the above questions and sincerely thank you for responding. Misery likes company and yours is greatly appreciated!

Never too many questions and I'm always glad to share info and discuss! It will be helpful to both of us and hopefully others who have similar situations can give their input.

1. I stopped taking the Daro and Nubeqa in April 2023. The hot flashes continued for only a short time as my body transitioned out but then stopped. No more hot flashes and my energy level and overall mood and outlook improved. I was handling these side effects okay and felt like they were worth it compared to the possible outcome with no treatment. What concerned me more was the potential long term side effects. I'm no expert but have researched a lot probably like you and most others on this site. I was concerned about other potential debilitating side effects - mainly coronary issues and osteoporosis. I felt like the intermittent ADT was supportable as a good option and one of my oncologists agreed with me. My other oncologist was skeptical and advised against it but is surprised and pleased with the current ADT vacation I've taken.
2. When I went off ADT I was monitoring my PSA once a month and now about every 60 days. I was told once a month is too much and creates too much anxiety. It probably depends on the individual but not knowing is more worrisome for me and I preferred checking it more often.
3. The oncologist who advised against intermittent hormone therapy was my original doctor and he did strongly recommend the triplet therapy. I chose to try just ADT first and stay away from chemo understanding that the triplet therapy is standard of care. Chemo wasn't going to "cure" me and my doctor explained the benefit of a favorable outcome in terms of only months, and that just didn't seem worth it in my opinion. I would never suggest that anyone not listen to their oncologist, or avoid chemo. It was just an individual decision that I made knowing the risks. And I continue to get second opinions.
4. I have been extremely lucky to have my wife as a "life coach" and supporter through this. She researched and read about alternatives to standard cancer care and eventually locked in on the importance of diets. When the metastasis was confirmed, I immediately switched to a 80-90% vegan diet - no red meat, chicken, dairy, sugar, etc. but I do eat fish. Whether that has been a game changer for my success on ADT, and now without ADT, I have no idea. I really wish there was a way to determine that. I do know it has helped me cope with the side effects and avoid foods that supposedly feed cancer growth. The hard part for me is maintaining weight but I do feel better. Her original research started with the book "Chris Beat Cancer" if you want to check that out. I'm trying to balance the medical and non-medical research and advice.
5. Yes, I say I'm realistic because obviously most of the data (at least as far as I have read) is that it finds a way to come back. As successful as ADT is, it's not considered a cure so I am realistic in the probable outcome of the other shoe falling but hopefully way down the road. There are some isolated cases where lung-only metastasis patients have had favorable outcomes. So, I'm always hopeful and trying to figure out next steps as the medical options improve.
6. I have no scans scheduled at this point, but if my PSA jumps up again, the plan would include a PET scan to identify the location and extent. I did have a chest CT a couple of months ago and lung nodules still showed up but were fewer in number and smaller in size. Unlike with a PET scan, the doctor could not say which ones were cancerous and which ones were benign but the PSA is down. I think for all of us here, it's the unknown that is so difficult and then trying to figure out a path with all of these variables.

I'll be hoping to hear good news from you! Let's definitely keep comparing treatments and alternatives.

I suffered quite a bit from hot flashes. My doctor suggested acupuncture. He said it works for about 70% of his patients. I found that 2-3 treatments reduced the effects for about six months. It was preferable to antidepressants, which also worked but kept me up at night.

So your a vegan diet man; may as well try white button mushrooms in powdered form 1/5 tsp. Mixed in the coffee or hot tea. Works for me on a daily basis. PSA < .01 for 24 months now

I need to decide in 3 weeks to get my Lupron shot despite surgery and radiation. I have forgotten comments in the past that there may be a better substitute for Lupron ? If so please remind me , not sure why my oncologist didn’t discuss other options, they seem to be sold on Lupron?

I ve been on Trelstar. Not sure which one is better after extensive readings. My Navy friend is on Lupron and has the same side effects as I do.

This will be my second lupron shot , first one was before I went through the radiation, guess I throw the dice , despite my oncologist is not a warm and friendly guy , he is regarded as one of the best in Boston 🤷‍♂️🤷‍♂️🤷‍♂️