IMRT Radiation and ADT

There are other radiation options besides IMRT, including SBRT and Proton Beam.

I'm not qualified (obviously) to say which would be better for your husband, but I do recommend having a serious conversation with his radiation oncology team to make sure they're suggesting IMRT because they believe it's the best treatment option for him, and not just because it's more readily available at their facility than SBRT or Proton Beam.

As for ADT, it's a bit of a challenge. Some common side effects include hot flushes, loss of body hair (I have smooth legs for the first time since I was 10), mood swings (keep the kleenex handy), sexual dysfunction, and loss of muscle mass and bone density — it essentially pushes a man into the equivalent of menopause (all reversible a few months after he stops).

From a patient's point of view, I do strongly recommend Orgovyx (pills) over Firmagon (injections). I've had both. They work the same way and have the same chronic side effects, but Firmagon also has some acute side effects after each monthly injection: for me, they included a large swelling around the injection site, rashes, and about three days of flu-like symptoms (including muscle pain) every month.

Switching from that to a daily pill has been a game-changer for me.

I'd suggest consulting a facility that has a Mridian Viewray. His situation looks as though the 5 radiation treatments might be an advantage. The total Gy is 40 instead of 60 which preserve more function. The method of using MRI during radiation treatment would give him a smaller margin, as they always treat a margin beyond the tumor.
There are several of these machines scattered around the country. One at Hoag Memorial and another at City of Hope in California. There are two in New York. Google Mridian Viewray video.

@bear14: I agree with @gently. I had the MRIdian as well, with 5 treatments. It has real time MRI so what they can see in real time, gets treated. Elekta is another machine with similar capabilities. Generally, the whole prostate gets treated plus a “margin” that can expose your healthy tissue. You want Jeff to protect his healthy tissue and use a machine that has smaller margins, 2 mm for the MRIdian vs 3-5 mm with other machines. Healthy tissue exposure affects side effects.

Multiple opinions outside your current institution at a center of excellence is also important and spaceoar, if he gets radiation.

Everybody is different in their reactions to ADT as you can read on this site. My brother had nasty side effects but was not someone who exercised, as you said Jeff does and anecdotally, that seems to help.

It is great that he has your active support. Keep coming back.

Yes, exercise makes a huge difference. I wasn't able to exercise much during my first year on ADT (I was in a hospital bed, then wheelchair), but once I was able to start moving more, my side-effects became significantly more manageable. The more I move, the milder they seem.

Hi @bear14, I hope you saw the helpful replies to your questions from fellow members like @northoftheborder @bens1 and @gently. Additionally, here's a list of related discussions about radiation and ADT that might interest you:
https://connect.mayoclinic.org/group/prostate-cancer/?search=Radiation%20and%20ADT&index=discussions
You can use the group search to refine the search results further to find discussions related to your questions.

Bear14, you and your husband certainly are doing your research. It's a lot to learn and rather daunting to make these treatment decisions, isn't it? Have you and your husband landed on a treatment decision? Do you have more questions?

Thanks so much for the information, Colleen. You are so right- there is so much information and there is a lot we need to learn and understand. Right now, Jeff has set up an appointment for about six weeks out. He has been emailing his ongoing questions about every two weeks to his RO. However, the answers they send make us come up with still more questions! We just learned that his RO wants to do radiation to the 3mm margin posteriorly and a 5mm margin around the remaining prostate and lymph nodes. Jeff's PSMA pet shows that the PCa is contained within the prostate (although it is butting up against the capsule) and I think they suspect that there could be some microscopic PCa cells looming. We are trying to decide if we should make an appointment with a medical oncologist or even just another rad. oncologist to get another opinion.... Any thoughts regarding any of this out there? Thanks again- we are so appreciative of your replies.

@bear14, I think many of the guys here would concur that getting a second opinion can be helpful. If Mayo Clinic is an option for you and Jeff, you can submit a request here: http://mayocl.in/1mtmR63

I think it's pretty common that answers to your questions can lead to more questions. It's like questions arise as you gain a deeper understanding and you know what to ask.

Yes, it's a long learning path, and it's OK not to understand everything all at once. I've been on the PCa journey for almost 3 years now, and I'm still learning something new almost every week (fortunately, it's been mostly positive).