One year PO and now it seems I'm Stage 4 :-(

It seems that your cancer has a strong propensity to metastasize. You are in salvage mode and if you can pick off the mets with radiation, you will be fine. But the conflict is ADT: it will slow tumor down but also prevent them from being detected by PSMA PET scan. It is odd that your mets are "in the bone" whereas most prostate cancer mets are "on the bone."

I also endorse Orgovyx.

@ctsenior said "But the conflict is ADT: it will slow tumor down but also prevent them from being detected by PSMA PET scan."

That was one of the questions my wife had for him, would the hormone therapy actually help or just mask it. His answer was it does a little of both, help keep it under control but also can mask it from showing up.

Is Orgovyx going to be something that insurance doesn't want to pay for over Lupron? I've looked it up and it appears it does cost more. I suspect I'm going to meet my $4200 out of pocket max this year.

Do some people only do only radiation and no hormone treatment?

@ctsenior said "But the conflict is ADT: it will slow tumor down but also prevent them from being detected by PSMA PET scan."

That was one of the questions my wife had for him, would the hormone therapy actually help or just mask it. His answer was it does a little of both, help keep it under control but also can mask it from showing up.

Is Orgovyx going to be something that insurance doesn't want to pay for over Lupron? I've looked it up and it appears it does cost more. I suspect I'm going to meet my $4200 out of pocket max this year.

Do some people only do only radiation and no hormone treatment?

@im62at2024 In reverse order: At stage 4 everyone has ADT + radiation. Can be optional for Intermediate stage but usually recommended if 4+3.
> Yes, you will easily meet your max if it is $4200 even with a 10% copay (most are 20%).
> Insurance companies do not want to pay for any expensive drugs and all of the good ones for prostate cancer are expensive. Suspect they will want you are Lupron + Zytiga (generic). Should appeal to get Orgovyx + 2nd gen lutamide (Nubeqa, Erleada, Xtandi). All are over $10K per month which makes the $2K for Orgovyx look cheap. Zytiga is very hard on the heart, worse than Lupron, but at a few $100 vs $10K+ per month it will be pushed by insurance.
>> If on Medicare will easily hit part D max.

@jim18 Just fyi, my husband took Zytiga for over three years and has been on Lupron forever, and has had no resulting heart problems. Zytiga kept his cancer suppressed for over three years. If your doctor suggests them, don't dismiss Zytiga and/or Lupron out of hand until you see how they work for you. Every man is different.

I saw my my surgeon and now my urologist, as my other urologist is retiring soon, this past Tuesday, he's the one that removed my prostate, he was visibly a bit upset that I was there under the circumstances he said, "to be honest I thought I was through with you". He said everything he removed, the lymph nodes, the seminal vesicles, the extra margins he removed where he got really aggressive on the right side of the prostate all checked clear, no cancer cells. This is the first time I’ve seen him since my two week post-op appointment. He wants to get my testosterone down quickly. He wants to start me on Orgovyx but will likely end on Lupron in about a month for probably at least two years. He also wants me to see a medical oncologist to get their opinion on possibly doing chemo along with the radiation but it’s only to get their thoughts on it as whether it would beneficial or not. He also said like my RO that it had probably escaped the prostate before the surgery but had not taken up in my arm yet so it would not have shown up on my first PET scan early last year since the final pathology on. your prostate was T3a.

Fast Forward to the next morning. My urologist/surgeon called me at about 10am. He said he had just got up with my RO about my case and my RO doesn’t want me to start any hormone therapy at this time. He wants to radiate my arm and kill the cancer and test later to see if it brings my PSA level back down to undetectable like it was last August and November. That way if it doesn’t bring it down then he’ll know it’s somewhere else in me too but didn’t show up on the pet scan. If they start hormone treatment now it may mask the PSA number. I think he's is really taking this case to heart he called me buddy twice on the phone. The medical oncologist I’m seeing next week is also in the Wallace Cancer Institute. According to MyChart they’re going to start radiation on May 27th.

I saw my my surgeon and now my urologist, as my other urologist is retiring soon, this past Tuesday, he's the one that removed my prostate, he was visibly a bit upset that I was there under the circumstances he said, "to be honest I thought I was through with you". He said everything he removed, the lymph nodes, the seminal vesicles, the extra margins he removed where he got really aggressive on the right side of the prostate all checked clear, no cancer cells. This is the first time I’ve seen him since my two week post-op appointment. He wants to get my testosterone down quickly. He wants to start me on Orgovyx but will likely end on Lupron in about a month for probably at least two years. He also wants me to see a medical oncologist to get their opinion on possibly doing chemo along with the radiation but it’s only to get their thoughts on it as whether it would beneficial or not. He also said like my RO that it had probably escaped the prostate before the surgery but had not taken up in my arm yet so it would not have shown up on my first PET scan early last year since the final pathology on. your prostate was T3a.

Fast Forward to the next morning. My urologist/surgeon called me at about 10am. He said he had just got up with my RO about my case and my RO doesn’t want me to start any hormone therapy at this time. He wants to radiate my arm and kill the cancer and test later to see if it brings my PSA level back down to undetectable like it was last August and November. That way if it doesn’t bring it down then he’ll know it’s somewhere else in me too but didn’t show up on the pet scan. If they start hormone treatment now it may mask the PSA number. I think he's is really taking this case to heart he called me buddy twice on the phone. The medical oncologist I’m seeing next week is also in the Wallace Cancer Institute. According to MyChart they’re going to start radiation on May 27th.