Next steps for metastatic low volume

Posted by Roxy2017 @roxy2017, 3 days ago

My history:

Brother prostate cancer at 58 metastatic regional still alive now at 69 after removal and hormone therapy. Now has recurrence after going off hormones. Father prostate cancer at 64, brachytherapy and radiation, lived twenty years to die of pancreatic cancer.

Me 70yo male. Slowly rising PSA led to an MRI in 9/23 which came back as a 2 on the pi rads scale. Continued to monitor. PSA continued to rise to 6.4 in 11/24. MRI in 1/25 showed likely cancer with one suspicious node right by the prostate and one suspicious spot on pelvis. Biopsy late January Gleason score 8. Early March PSMA showed additionally a very small faint spot on a rib but nothing else not noted previously.

Went on Orgovyx and Xtandi. Had 20 sessions of radiation in May for the prostate and node (but not the bone spots). PSA is now less than .1

What is next? Careful watching PSA? Another PSMA scan, if so when? Will talk to the radiation oncologist on Friday and get his take.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

That's funny. I asked my UO doc the exact same question yesterday after he was done placing fiducial markers. I'm on Orgovyx and Nubeqa and start radiation in about 2 weeks. IMRT x 20. I asked, "What happens next after radiation?" He said, "We'll know in the Spring once we see what nadir looks like. See you in 3 months for bloodwork follow-up. Unless that tanks, there is zero chance you're coming off ADT."

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It’s hard to believe they would have 20 sessions of radiation and not hit that bone mets. One of the most common things is to get the bone mets radiated, Especially before they spread more and cause issues with your bone marrow. After radiation, the PSA drops very slowly so yours is pretty normal, Some people take up to three years for it to drop to the lowest point.

With the low PSA you have it’s unlikely that they will find anything with a PSMA Pet scan. Ask the radiation oncologist if you can get your bone mets zapped with SBRT radiation.

I got prostate cancer at 62. My brother got it at 75.. My father died from it, Which doubles the chance of my brother and I getting it. I got BRCA2 from my mother and along with my father‘s prostate cancer I got it younger than my brother. My brother didn’t have BRCA2 and that was why his prostate cancer came later.

What I’m getting at is that your brother and you should get a genetic test to find out if there is A genetic reason why he got it so much younger. There could be BRCA2 in your family, and that means every one of the Cousins brothers, sisters, and children should be tested. That’s what happened in my family when I was diagnosed with it. One of my aunts died of breast cancer, as did her daughter at 60. Another aunt got it, but survived and died of something else. This is way before they were able to detect BRCA2. We definitely got it from my grandfather who died of pancreatic cancer at 46.

You can both get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

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Profile picture for jeff Marchi @jeffmarc

It’s hard to believe they would have 20 sessions of radiation and not hit that bone mets. One of the most common things is to get the bone mets radiated, Especially before they spread more and cause issues with your bone marrow. After radiation, the PSA drops very slowly so yours is pretty normal, Some people take up to three years for it to drop to the lowest point.

With the low PSA you have it’s unlikely that they will find anything with a PSMA Pet scan. Ask the radiation oncologist if you can get your bone mets zapped with SBRT radiation.

I got prostate cancer at 62. My brother got it at 75.. My father died from it, Which doubles the chance of my brother and I getting it. I got BRCA2 from my mother and along with my father‘s prostate cancer I got it younger than my brother. My brother didn’t have BRCA2 and that was why his prostate cancer came later.

What I’m getting at is that your brother and you should get a genetic test to find out if there is A genetic reason why he got it so much younger. There could be BRCA2 in your family, and that means every one of the Cousins brothers, sisters, and children should be tested. That’s what happened in my family when I was diagnosed with it. One of my aunts died of breast cancer, as did her daughter at 60. Another aunt got it, but survived and died of something else. This is way before they were able to detect BRCA2. We definitely got it from my grandfather who died of pancreatic cancer at 46.

You can both get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

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Hard to believe but still common. Some clinics and doctors aren't up to date with the latest doublet and triplet approaches to treating metastatic prostate cancer (or they do know, and just aren't convinced yet).

In 2021 (at a Regional Cancer Centre affiliated with a university and big urban teaching hospital), they radiated my spinal metastasis even before they did the prostate itself. I didn't know anything about this stuff at the time — things were happening fast — so I'm lucky they did.

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OP back again. Thanks for the comments. I asked about irradiating the bones at the same time and he said that would be strereotactic and later if necessary. If I recall correctly he said that this was consistent with NCCN guidance based on the STAMPEDE trial in Europe. But we didn't get into what would determine necessary.

Sorry I didn't mention the genetic testing but that has been done given the cancer in the family (sister also ovarian at age 58). Nothing there really other than I would be a good candidate for PARP inhibitors later if needed.

Thanks all for your comments. Keep them coming!

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Profile picture for Roxy2017 @roxy2017

OP back again. Thanks for the comments. I asked about irradiating the bones at the same time and he said that would be strereotactic and later if necessary. If I recall correctly he said that this was consistent with NCCN guidance based on the STAMPEDE trial in Europe. But we didn't get into what would determine necessary.

Sorry I didn't mention the genetic testing but that has been done given the cancer in the family (sister also ovarian at age 58). Nothing there really other than I would be a good candidate for PARP inhibitors later if needed.

Thanks all for your comments. Keep them coming!

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The PARP Inhibitor is mainly usable if someone has BRCA. If they didn’t find that then telling you that the PARP inhibitor would help is questionable.. I know a couple of people that have tried it, that did not have BRCA, And it did not help at all. It was designed to help people with BRCA, though it has been found to help a little if you have Homologous Recombination Deficiency (HRD).

Now it is possible somebody’s hereditary DNA doesn’t have BRCA, But a somatic test could show that it is found as a result of the cancer. In those cases, the PARP inhibitor will work. The problem is that the BRCA in somatic tissue can also go away, Making the PARP ineffective in that situation.

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Profile picture for Roxy2017 @roxy2017

OP back again. Thanks for the comments. I asked about irradiating the bones at the same time and he said that would be strereotactic and later if necessary. If I recall correctly he said that this was consistent with NCCN guidance based on the STAMPEDE trial in Europe. But we didn't get into what would determine necessary.

Sorry I didn't mention the genetic testing but that has been done given the cancer in the family (sister also ovarian at age 58). Nothing there really other than I would be a good candidate for PARP inhibitors later if needed.

Thanks all for your comments. Keep them coming!

Jump to this post

Yes, that sequencing of IMRT and then SBRT - if necessary - is accurate. They are looking to see if your PSA remains low over time. How much time I cannot answer.
However, if your PSA begins to rise within a few months of IMRT, then it’s pretty much a sure bet that those bone lesions were metastases.
I forgot the statistical details of the STAMPEDE trial, but my guess would be that the less radiation the better.
Phil

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Profile picture for jeff Marchi @jeffmarc

It’s hard to believe they would have 20 sessions of radiation and not hit that bone mets. One of the most common things is to get the bone mets radiated, Especially before they spread more and cause issues with your bone marrow. After radiation, the PSA drops very slowly so yours is pretty normal, Some people take up to three years for it to drop to the lowest point.

With the low PSA you have it’s unlikely that they will find anything with a PSMA Pet scan. Ask the radiation oncologist if you can get your bone mets zapped with SBRT radiation.

I got prostate cancer at 62. My brother got it at 75.. My father died from it, Which doubles the chance of my brother and I getting it. I got BRCA2 from my mother and along with my father‘s prostate cancer I got it younger than my brother. My brother didn’t have BRCA2 and that was why his prostate cancer came later.

What I’m getting at is that your brother and you should get a genetic test to find out if there is A genetic reason why he got it so much younger. There could be BRCA2 in your family, and that means every one of the Cousins brothers, sisters, and children should be tested. That’s what happened in my family when I was diagnosed with it. One of my aunts died of breast cancer, as did her daughter at 60. Another aunt got it, but survived and died of something else. This is way before they were able to detect BRCA2. We definitely got it from my grandfather who died of pancreatic cancer at 46.

You can both get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

Jump to this post

Hi Jeff, I've heard it can take 18-24 month post radiation to reach your nadir. I had SRT and 18 months of ADT (Orgovyx + Abiraterone). The SRT concluded in May of 2024 and the ADT concluded in June of 2025. My PSA was undetectable for 9-12 months. One month after cessation of ADT my PSA was 0.054. It climbed for a couple of weeks up to 0.065 on July 28. It has been declining since and was 0.04 last week. I'm thinking that the initial climb was due to the complete elimination of the ADT effects and that the subsequent declines are due to the continuing SRT effects. Have you ever heard of PSA declining all the way to undetectable for someone in my situation? As background I was diagnosed was diagnosed in August 2021, RP in September 2021, GS 8, stage Pt3b.

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Were any of your bone lesions confirmed to be cancer? Ribs are supposed to be very common for false positives. SBRT could be applied to both bones just in case, but then you may never know if they were cancerous or not. I have one spot on my first rib which is suspicious for cancer but can't be confirmed with biopsy or MRI. I'm going to get 8 fractions of SBRT to it just in case, in addition to SRT to my prostate bed and pelvic lymph nodes even though I had no PSMA Uptake there or anywhere else other than the first rib . I'm also getting a second opinion, but I started a short duration ADT program already as my PSA went from .24 to .42 in six weeks.

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Profile picture for ddl @ddl

Hi Jeff, I've heard it can take 18-24 month post radiation to reach your nadir. I had SRT and 18 months of ADT (Orgovyx + Abiraterone). The SRT concluded in May of 2024 and the ADT concluded in June of 2025. My PSA was undetectable for 9-12 months. One month after cessation of ADT my PSA was 0.054. It climbed for a couple of weeks up to 0.065 on July 28. It has been declining since and was 0.04 last week. I'm thinking that the initial climb was due to the complete elimination of the ADT effects and that the subsequent declines are due to the continuing SRT effects. Have you ever heard of PSA declining all the way to undetectable for someone in my situation? As background I was diagnosed was diagnosed in August 2021, RP in September 2021, GS 8, stage Pt3b.

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It is quite common for a PSA to bounce around a little bit, especially after treatment. That .04 sounds great. Don’t be afraid if it bounces around a Little, You’ve already seen that can happen.

3 1/2 years after surgery, my PSA started rising, so I had salvage radiation. They gave me a six month ADT shot before the salvage radiation. My PSA stayed undetectable for 2 1/2 years before it started rising again (I have BRCA2 so Recurrence is normal). So yes, Your PSA can become undetectable after treatment like you describe.

Forgot to mention that the standard they go by is if your PSA is < .1 you are considered undetectable.

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OP here again. Just back from radiation oncologist. He said my call as to whether I should get another PMSA scan at this point. So I opted to do so and it will be two weeks from today. Thanks again everyone for your comments.

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