Can I Manage Testosterone w/ ORGOVYX and Skip Radiation?

With only Orgovyx (and no other treatment), there's a strong chance that the cancer will become castrate resistant in a couple of years, so it will be able to grow even with your testosterone blocked.

Combining an ARSI like Erleada can help delay castrate resistance (often for years). But if you don't do something to address the primary cancer, like radiation or a prostatectomy, there's a good chance that it will spread eventually (though it's hard to say when that will be).

Also, Orgovyx will block all of your testosterone and force you into the equivalent of menopause. Do you want to live indefinitely with side effects like hot flushes, loss of body hair, sexual dysfunction, low energy, muscle and bone mass loss, elevated risk of heart disease and weight gain (as those of us managing advanced prostate cancer do)?

Talk all of this over with your oncology team and then decide what's best for you.

I'll also mention that modern radiation like SBRT really isn't all that bad. I had no side effects at all during my radiation itself, though I did develop some a year later because of mild damage to the bottom of my bladder.

Best of luck. These are hard decisions, and in the end, you're the only one who can make them.

Goodness, that's a lot to deal with!

If your life expectancy is less than 5 years the NCCN guidelines recommend ADT/intensified ADT only. If longer than that then you should probably pursue some type of RT or prostatectomy (assuming disease is confined to prostate per PET scan).

If you're concerned about overspray from radiation onto your colon then there are ways to minimize that risk. One is having a gel placed between the posterior of your prostate and your rectum which will protect the latter. The other is proton beam radiation which has minimal irradiation past the targeted area. You can find where proton beam is available here:
https://proton-therapy.org/findacenter/

Thank you to both @russ777 and @northoftheborder

I really want to take the path of least side effects in a combination of both medication and treatment, i.e. orgovyx + radiation, in my case.
Isn't that what everyone wants but seldom achieves with damage to the bladder, rectum, anus and more?
What are thoughts on just having my prostate removed while all cancer is still contained within?
I know there are undesirable side effects with prostatectomy also but should it be a consideration?
Iam 74, not obese or diabetic, no other health problems other than already stated.
I appreciate your responses!
PAUL

It's a very personal decision, and I think either radiation or a prostatectomy would be a reasonable choice. As I mentioned, there's no advantage either way for your future survival odds (at least, that's what my oncology team told me, though surgery wasn't an option for me anyway at my stage).

Unfortunately, there's a small but non-trivial chance that some cancer has already escaped, so removing the prostate isn't a guarantee that it won't recur. I'd make the decision (in consultation with your medical team) solely based on expected side-effects and how well you tolerate surgery and anesthetic.

@paul28 There are several types of 5 hypo fractional radiation treatments with narrow margin real time image capabilities. I focused on minimizing my side effects by looking at specific radiation machines that had the least healthy tissue exposure, which impacts side effects. For me, since 2023, I have had minimal side effects and I started with a psa of 10.2 and most recently had .75 psa. Obviously, my Prostate is still producing some psa.

@bens1
I understand something about what you are saying and it's great to know.
What specific radiation would be best or which have you received with your results?
What questions should I be asking?
Thank you so much!
PAUL

Paul: every situation is different regarding radiation and where the cancer is, size of your prostate, metastasis and so on but for me, I had narrowed my choice down to the MRIdian linac machine and Proton Therapy. I chose the MRIdian because of the radiation that healthy tissue around the prostate might be exposed to, which is referred to as the margins. The MRIdian uses 2 mm margins vs 3-5 mm margins for most other types of radiation and machines. Unlike any other radiation machine (except the Elekta which has real time mri as well) it has a real time built in MRI so what you see, is what you treat. I felt more comfortable with that versus fused images transferred over to other radiation machines. I wanted the real time dynamic planning capabilities. The MRIdian also has an auto shutoff feature that turns off if the machine detects radiation going outside the mapped area. The Mirage randomized trial study also confirmed to me the importance of real time imaging benefits.

I also had spaceoar inserted to separate the rectum from the prostate.

There are many success stories with Proton therapy as well as other radiation machines. Others will talk about their success with Proton. For me, if Proton therapy had the MRIdian features, I might have chosen Proton. Its beam goes in and based on a calculation, stops at the end of the treatment spot. I had two radiation oncologists with experience with both the MRIdian and Proton therapy mention the rectum bleeding issues associated with Proton therapy, whether they had spaceoar or not. Others on this site did not have issues with bleeding rectums and proton therapy and swear by Proton Therapy. Most people have been satisfied with their choices and you are asking a bunch of patients with lots of different experiences for feedback so…good for you. All the responses mixed in with some doctor expertise should give you more comfort with your decision.

There are many questions to ask but knowing that all your choices are promulgated as somewhat equally successful in the long term, you might want to ask: if you can get treated in 5 hypo fractional sessions, what margins are being used by any machine the institution uses, do they offer spaceoar or bioprotect spacers, can you get a Flomax prescription for urine flow ahead of your treatment and generally, focus on any question that helps you feel better about short and medium term side effects. Sometimes the side effects with whatever treatment you choose are short term a d sometimes not. Get multiple opinions, Telehealth or otherwise. Clearly it’s not your first rodeo with cancer but one day at a time and keep coming back.

Very good input from others; array of information.
I would suggest reading relevant portions of "Surviving Prostate Cancer " by Patrick Walsh MD and the Patient Guide free from the Prostate Cancer Foundation pcf.org in download or hard copy. That would be the "hub of my wheel".
Surgery, radiation, medication strategies already mentioned would be some of the spokes of that wheel.
For me, that is a less overwhelming method to begin to consider action.
Considering your prior cancers, I would seek input from the Surgeon, Radiation Oncologist and/or Medical Oncologist to help me rule in or rule out treatment choices that might be problematic with my medical history.
Best wishes.

My advice to you would to not be swayed one way or the other by individual reports on this or other sites. Individual experiences are anecdotal and aren't really helpful on applying to your case. Large studies applicable to your case are what's important. The best thing you can do is to get multiple opinions from very qualified Urologists, Radiation Oncologists and Medical Oncologists, preferably at Centers of Excellence.

You mention you have a core with a G9. That is considered high grade prostate cancer. Remember that the needle biopsies sample only a small portion of the prostate so there no way to know how much and what grade cancer is present that wasn't sampled. I believe with a definitive G9 diagnosis most professionals would tell you to expedite treatment planning as high grade (G8-10) prostate cancers have a higher affinity for metastatic spread.

With your complicating diagnosis of previous colon cancer and metastasis to the lung, I believe including a Medical Oncologist in the decision making would be prudent.

Good luck to you on your journey.

Excellent insight in your reply Ben. Not to hijack the thread but I am curious about one point. When we talk about margins as being x mm, does that mean or imply that there is zero, as in unmeasurable radiation outside of that margin? I'm referring to what would be the transverse plane of the beam, not longitudinal.