Metastatic M1A survival and ED impact, Eligard and Zytiga ADT only

What were the SUVmax scores (in the PSMA PET scan report) of those M1A lesions, and your blood, liver, and parotid glands?

I’ve read that it is still considered the standard of care to treat the primary tumor in the prostate with radiation for patients with an M1A diagnosis.

Historically, when prostate cancer metastasized, local treatments like radiation were skipped in favor of systemic-only therapies. However, major clinical trials—such as the landmark STAMPEDE trial—fundamentally changed this approach. The medical consensus firmly supports adding prostate-directed radiation to systemic treatment.

Yes, this will also include doublet therapy: ADT + ARPI (Eligard + Zytiga).

I was on Eligard for 6 months. Yes, it totally wiped out my libido, but never caused ED issues. What happens is that with the loss of libido, most guys just stop doing it. What I was told by my medical oncologist was that the key to not losing it, is to continue “doing it,” despite the “want to” not being there. I was told that it’s a “use it or lose it” scenario.

I’m about 5+ years post-proton radiation + ADT, and never experienced ED - also thanks to my medical oncologist’s recommendation to ramp up my resistance-training exercises to minimize the adverse metabolic side-effects of hormone therapy; that might(?) also have had the side-benefit of keeping the blood flowing “down there” as well, since ED is often much about blood flow and hydraulics. ADT was just a minor annoyance.

Try not to get ahead of yourself until after you’ve nailed down the appropriate treatment for your diagnosis. You probably won’t need Viagra, Cialis, Bimix, or Trimix.

^^^^^^Brian has addressed the ED issue, but I just wanted to say that I thoroughly researched the standard of care for mCSPC last Sept. leading up to my IMRT (radiation) in Oct. and it included radiation of the primary tumor. Typically, ADT/ARSI for 2-3 months preceding a course of proton or photon radiation to the prostate. I'm surprised to hear you were told radiation is no longer an option. Then again, things are changing so fast in PCa treatment that its possible I'm just behind on my reading, but I don't think so.

@brianjarvis

Thanks for your comment Brian. I'm glad that you're 5 years out and sound like you're doing well. I'm meeting with an oncologist on 8/7 and another urologist for a second opinion. I asked the same question that you pointed out about why not radiation and ADT still? I was told that once it is no longer contained there are potential microscopic clusters and not just the lymph nodes identified but others that are still undetected. There are negative consequences risks for the radiation itself, especially outside of the prostate. The pet scan did not detect cancer in any of my organs or bone, only the the lymph nodes that I indicated. I will be asking questions about radiation and ADT versus ADT only to the oncologist. I am encouraged by your statement that you did not experience ED. Thank you for your personal insight, specifically about working out in the gym, keeping things flowing so to speak in that area. That is my intention as well to continue to active in the gym while on the ADT. Greatly appreciate your comments. I know that the Mayo clinic doctors monitor this chat. I'm curious what their medical opinion is regarding radiation and ADT versus ADT alone once it is M1A/ Gleason 8?

@mjp0512

Thank you for sharing your insight. As I indicated in my response to Brian, I meeting with an oncologist on 8/7 and I intend to ask specifically about why the recommendation is ADT only versus ADT and radiation. I'm hoping someone from Mayo clinic can weigh in on that question as it relates to standard of care or their recommendation specifically.

Hello John, Same numbers as yours, GS8, 4+4, multiple lymph nodes, no organ or bone mets. On Orgovyx and Zytiga w/prednisone since Feb 2026, switched to Nubeqa with Orgovyx last month. Much better! My MO also said no radiation and that Pluvicto would be in my future, perhaps in a year or two. Im good with that but I am 72yo as opposed to your 63. I can say that erections are still possible, it is just that I have no interest...lol. Im good with that also. I am making the best of the situation with as little treatment as possible, the side effects that may come with radiating the prostate really had me worried. If the cancer gets into my bones Ill consider radiation to the mets then. Exercise, eating right and enjoying the time I have left are my main focus now. For me, quality of life is most important, Im not going to spend the next 5 years being miserable just to live a few more months. Thanks for your post John, I will be interested what your Doc has to say in August.

@johnl777 I don't think any Mayo doctors monitor this forum, and I have never seen one post comments here. The forum is monitored by Mayo employees and volunteers who do not offer medical advice.

@johnl777 This is where hitting the cancers - both in the prostate and in the pelvic area - simultaneously works best:
> It’s true that there are potential microscopic clusters and not just the lymph nodes identified but others that are still undetected. The systemic treatment (ADT + ARPI) starves and weakens (& suppresses) the prostate cancers throughout the body, but, it doesn’t kill them. The radiation destroys the DNA in the cancers in the prostate. You may still even need direct treatment of the lymph nodes.

> As for the potential negative consequences risks for the radiation itself, especially outside of the prostate. Remember that what radiation doesn’t hit, it doesn’t affect. I had my treatments in early-2021, and chose proton radiation in order to minimize radiation entry-dose, scatter, and exit-dose. Now 5 years later, medicine and technology have moved ahead, and now there are machines & technologies that further limit overshoot, minimizing the risk of hitting nearby healthy tissues or organs.

My oldest brother had a diagnosis somewhat similar to yours early last year —> 7(4+3) with suspected lymph node involvement. So last May he had 28 fractions of IMRT (70 grays total) to treat the prostate lesions and simultaneously had 50.4 grays total to the pelvic nodes. (They referred to that as “MRI-guided micro-boosts to the MRI-detected pelvic lesions, per the FLAME trial.) Plus he’s on 2 years of ADT.

Something to consider discussing with your medical team.

It used to be they always wanted to treat the prostate. Recently they found that it doesn’t make any difference with someone who already has extensive spread of the cancer. Some doctors will still do it feeling that it can prevent future spread.

I was on the two drugs you are on. Eligard/lupron (same drug) For six years and Zytiga for 2 1/2 years. Zytiga gave me high blood pressure and multiple Afib events. People I have worked with have had serious fatigue problems with Zytiga And had to increase their prednisone from 5 mg to 10 mg due to the fatigue. For the 2 1/2 years, I was on Zytiga My PSA was only undetectable one month.

I switched to Orgovyx and Nubeqa Three years ago. Nubeqa Has no side effects for most people unlike Zytiga. It also doesn’t pass the blood brain barrier like the other ARPI drugs, so it doesn’t cause the same brain fog. I’ve been undetectable for 32 months after 16 years of prostate cancer. I was only a 4+3 and had surgery and radiation and I’ve had metastasis zapped on my spine.

People have had a lot of success with Cialis or Viagra while on ADT. The Trimix injections also worked quite well even with people that have had surgery and radiation.

Prostate cancer has been a chronic disease for almost everyone very seldom is it a deadly disease. I know people that have had worse cases than you that are alive many years later.

@brianjarvis

Thank you Brian for the detailed info and point regarding radiation destroying the cancer DNA, targeting, and risks. I will address with the oncologist on 8/7. I'm sorry hear about your older brother. I hope his treatment is going well. Greatly appreciate you sharing details of both of your experiences. I'm going to formulate a list of questions before the oncologist meeting. This is very helpful . Thanks again.

@jeffmarc

Hey Jeff, I'm glad that you are doing well and have been doing well for years, that is awesome, and also very encouraging. Great to hear the change in your meds has alleviated the side effects you were experiencing. I appreciate you providing a specific RX names. I'll address the specific drugs with my treatment team and share your comments. I have been on blood pressure meds for 20 years. It does concern me that you were having BP/afrib events. I'll specifically discuss this as well. Thanks again for your insight. Greatly appreciate it