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

Posted by im62at2024 @im62at2024, Apr 30 8:23pm

Hi, It's been a while since I posted on here so here goes a quick review of my past and my latest issue.
I had been under active surveillance for almost 4 years since 2021 with PSA peaking at 5.8 and then slowly decreasing PSA numbers and I had biopsy Gleason scores of 3+3=6 back in 2021. I was on Finestaride and Flowmax during the AS. Then in Oct. 2024 my PSA jumped 30% from 3.6 to 4.6 and they did another biopsy in Jan 2025 and I had Gleason scores of several cores at 4 + 3 = 7 (Grade group 3) and one at 4+4=8/10, (Grade group 4). My first PET scan in late February 2025 showed no spread. and genetic testing in 2021 said not likely to progress. I had what was supposed to be routine prostate removal via Da Vinci method last May. The surgeon said he had to get fairly aggressive with the right side whatever that meant and he spotted a cyst on my colon and made the decision to remove it. The cyst and lymph nodes were clear. My final prostate pathology after surgery was T3a. I had gotten two good PSA tests of < 0.1 in August and November. Come Feb. I was at 0.2 and 4 weeks later I was at 0.3. They ordered a PSMA PET-CT scan and found the it has metastasized into my right arm humerus bone, I had noticed some pain in that bone as far back as this past January but really didn't think anything about it.

The part of the PSMA-PET scan we are concerned with:
BONES & SOFT TISSUES: Sequelae of prior cervical spine ACDF and posterior instrument fixation with interbody disc spacer in the lower lumbar spine. Focal tracer uptake significantly above background associated with ill-defined sclerosis in the proximal right humeral diaphysis, compatible with metastasis (SUV max 28, image 82). Low level tracer uptake associated with the musculature of the right shoulder, favored reactive in etiology.

I don't personally know anyone that's had Prostate metastasis in the bone. I have my first visit with an oncologist next week with a Dr. Gregory Mitro and so far from asking around I've only heard good things about him. I have a short list of questions for him but I'm open to suggestions as to what to ask and what to expect. It's strange that it would travel all the way to an arm bone.

I really didn't expect to see myself in this position as I've always stayed on top of my health fairly well and have PSA tests going back over 10 years.

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

I'm sorry to hear your news.

I had a bone metastasis already at first diagnosis in 2021 (also in my spine). I think bones and lymph nodes are the most common places for prostate cancer to metastasise. My oncologist says it tends to show up in the spine, pelvis, and/or the "long bones" (arms, legs).

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Questions to ask your medical team:

1. Can you start systemic "doublet" therapy (ADT + a -lutamide or Abiraterone) right away?

2. Can they radiate the individual metastases, or is chemotherapy necessary?

3. Can you join the IRONMAN study, which gives you more frequent monitoring and more-comprehensive bloodwork?

4. Have you been tested for germline DNA mutations like BRCA1/2?

I suggest not asking about life expectancy, because the SEER data they use to answer that question is badly out of date given all the new treatments. The standard answer used to be "3–5 years" with bone metastases, but it's starting to look like they might be able to manage it indefinitely as a chronic illness rather than a terminal one (I've had no progression since 2021, and am currently NED — no evidence of disease).

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Dr Kwon discussed using radiation in spot metastasis in addition to systemic medicines. Maybe ask about that.

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Profile picture for lyricw @lyricw

Dr Kwon discussed using radiation in spot metastasis in addition to systemic medicines. Maybe ask about that.

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@lyricw Yes, that's becoming much more common these days for oligometastatic cancer. It's called MDT (metastasis-directed therapy).

Dr Kwon has been part of a big shift in the treatment of oligometastatic prostate cancer over the past decade, from the purely-palliative

"let's keep the patient comfortable in his last couple of years"

to

"we don't know for sure yet if we can cure this sucker, but let's act as if we can"

(and in the meantime, add years or decades to the patient's life).

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I know so many people that have metastatic to the bone, it is just a very common problem With prostate cancer patients. 10 years after I was diagnosed and had surgery and radiation I had a metastasis in my spine. It seems that prostate cancer likes to get to the bone before it even gets to tissue, Other than lymph nodes.

You have a pretty high SUV on that bone metastasis, and you probably should get it zapped with SBRT radiation real soon, before it invades the bone marrow and then it becomes really aggressive and bone has to be partially removed.

You say you had a genetic test, but a genetic test doesn’t give ideas about recurrence, it tells you whether or not you have a hereditary genetic problem. Seems you may not have a hereditary, genetic test. You might want to get one to find out if genetics could be one of the reasons you are having cancer reoccurrences. That happened to me, 10 years after I was diagnosed and had treatment I found out I had BRCA2 and that’s why it keeps coming back. There are tests which will show whether or not you could have a reoccurrence, they are tissue-based genomic classifier (gene expression test. Tests like the Decipher, Oncotype DX Genomic Prostate Score (GPS), Prolaris, and ProMark are test that tell whether or not you Are likely toget a reoccurrence.

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@northoftheborder pretty much nailed it.

@jeffmarc as usual, has use thioughts.

You may want to delve further into those choices with your medical team...

There is some data which may point to MDT by itself pushing back the need for systemic therapy.

The data also generally indicates there may be longer PFS, RPFS if using systemic therapy with MDT, so...

Do they see systemic therapy as continuous or for a definitive period, aka, intermittent...?

How long would I be on systemic therapy...? It may range from 6-36 months though with your clinical data, more likely on the right side of that range.

Depending on that answer and their reasoning, the discussion may turn to what clinical criteria constitutes a decision to de-intensify treatment...?

Which ADT agent, say Lupron vs Orgovyx, there is a difference in the side effects and recovery when coming off treatment. Same for the ARI.

Chemotherapy from what literature I've reviewed has more effectivenss in high versus low volume cases

Kevin

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Profile picture for kujhawk1978 @kujhawk1978

@northoftheborder pretty much nailed it.

@jeffmarc as usual, has use thioughts.

You may want to delve further into those choices with your medical team...

There is some data which may point to MDT by itself pushing back the need for systemic therapy.

The data also generally indicates there may be longer PFS, RPFS if using systemic therapy with MDT, so...

Do they see systemic therapy as continuous or for a definitive period, aka, intermittent...?

How long would I be on systemic therapy...? It may range from 6-36 months though with your clinical data, more likely on the right side of that range.

Depending on that answer and their reasoning, the discussion may turn to what clinical criteria constitutes a decision to de-intensify treatment...?

Which ADT agent, say Lupron vs Orgovyx, there is a difference in the side effects and recovery when coming off treatment. Same for the ARI.

Chemotherapy from what literature I've reviewed has more effectivenss in high versus low volume cases

Kevin

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@kujhawk1978 For long-term systemic therapy with metastatic castrate-sensitive prostate cancer (mCSPC), an important trial to watch is LIBERTAS:
https://clinicaltrials.gov/study/NCT05884398
Previous studies have shown that intermittent ADT results in worse outcomes with mCSPC (unlike with non-metastatic cancer), so current standard of practice with mCSPC is to stay on ADT for life. However, most of the data for those studies was collected before the widespread introduction of ARSIs like the -lutamides or (previous-generation) Abiraterone in doublet therapy for mCSPC.

The phase III LIBERTAS trial is looking at whether exceptional responders to doublet therapy — showing a rapid and stable PSA decline after starting ADT+Apalutamide — can safely drop the ADT and use *just* Apalutamide (Erleada) for long-term maintenance. That would allow testosterone to return to support bone/heart/muscle/endocrine health, but still block any stray dormant prostate-cancer cells from receiving the T signal to start reproducing.

The preliminary results are expected this fall, and final results at the end of 2027. I'm on Orgovyx + Erleada, so my oncologist and I are obviously monitoring this trial closely. If it's successful, I'll expect that the results will be similar with the other -lutamides.

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My wife and I met with the radiation oncologist Dr. Mitro for the first time yesterday and were there from 8:30 to a little after 11 but it was worth every minute. He’s the most thorough doctor I’ve ever seen and explains everything so you can understand it. It is in the bone marrow and the area is a bit over an 1”(2.7cm) in length and filling that entire area of marrow up and that’s why I'm having pain in that area of my right humerus. One of the first things he said was you're going to live a long time. His plan is to zap it 5 or 6 times with SBRT radiation. I go next week for a CT to map the cancer and when the mapping is finished we’ll start radiation which could be a week from then or so. He said the bone structure is still in really good shape because it was caught early so no need to operate to stabilize the bone. I’ll also be doing hormone therapy for 18-24 months, he said my Urologist has to decide that but will most likely be Lupron. He said I’ll have to stay on top of this because there’s always the chance it could show up somewhere else down the road so that means frequent PSA tests. He was impressed that I even knew about SBRT radiation therapy was and told him I have been on the Mayo Clinic Prostate forum for a while mostly lurking. I take it he is familiar with this forum because he said there's some guys on there that seem to know as much about prostate cancer as some doctors. He also said he wouldn't be surprised if some on here aren't retired doctors trying to help people. I was seriously impressed with the guy. I have seen so many different specialists over the years due to numerous medical issues I have including being a 37 year sufferer of Ménière's disease that had 5 hours micro surgery on my right ear for an Endolymphatic shunt in '95 that helped a lot with the vertigo but done nothing for the tinnitus and hearing loss, I had 3 or 4 level lumbar fusion in '09 that turned out to be a failure, I had C5-C7 fusion in '22 which was a resounding success but I now have another bad bone spur pressing a nerve in the C4 area that's going to have to be addressed but they won't do a thing until the cancer is under control. My point is this Dr. Mitro was a pleasure to deal with. When I went through those doors I was nervous as heck but I left feeling pretty good about it as good as having Stage 4 cancer can feel. He even explained in a little detail about how the TrueBeam linear accelerator works. I have to brag on the staff also they were extremely attentive the whole time we were there.

He said the cancer is not centered up on this cross section image of my humerus because it's several layers being shown and zoomed in 10x. He showed me other images that the cancer was perfectly centered inside the bone.

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Profile picture for im62at2024 @im62at2024

My wife and I met with the radiation oncologist Dr. Mitro for the first time yesterday and were there from 8:30 to a little after 11 but it was worth every minute. He’s the most thorough doctor I’ve ever seen and explains everything so you can understand it. It is in the bone marrow and the area is a bit over an 1”(2.7cm) in length and filling that entire area of marrow up and that’s why I'm having pain in that area of my right humerus. One of the first things he said was you're going to live a long time. His plan is to zap it 5 or 6 times with SBRT radiation. I go next week for a CT to map the cancer and when the mapping is finished we’ll start radiation which could be a week from then or so. He said the bone structure is still in really good shape because it was caught early so no need to operate to stabilize the bone. I’ll also be doing hormone therapy for 18-24 months, he said my Urologist has to decide that but will most likely be Lupron. He said I’ll have to stay on top of this because there’s always the chance it could show up somewhere else down the road so that means frequent PSA tests. He was impressed that I even knew about SBRT radiation therapy was and told him I have been on the Mayo Clinic Prostate forum for a while mostly lurking. I take it he is familiar with this forum because he said there's some guys on there that seem to know as much about prostate cancer as some doctors. He also said he wouldn't be surprised if some on here aren't retired doctors trying to help people. I was seriously impressed with the guy. I have seen so many different specialists over the years due to numerous medical issues I have including being a 37 year sufferer of Ménière's disease that had 5 hours micro surgery on my right ear for an Endolymphatic shunt in '95 that helped a lot with the vertigo but done nothing for the tinnitus and hearing loss, I had 3 or 4 level lumbar fusion in '09 that turned out to be a failure, I had C5-C7 fusion in '22 which was a resounding success but I now have another bad bone spur pressing a nerve in the C4 area that's going to have to be addressed but they won't do a thing until the cancer is under control. My point is this Dr. Mitro was a pleasure to deal with. When I went through those doors I was nervous as heck but I left feeling pretty good about it as good as having Stage 4 cancer can feel. He even explained in a little detail about how the TrueBeam linear accelerator works. I have to brag on the staff also they were extremely attentive the whole time we were there.

He said the cancer is not centered up on this cross section image of my humerus because it's several layers being shown and zoomed in 10x. He showed me other images that the cancer was perfectly centered inside the bone.

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@im62at2024 wrote "One of the first things he said was you're going to live a long time."

I'm glad to hear that (and that you had such a helpful appointment). Some people with a few bone metastases are still hearing at first that they have only a few years left to live, which in many/most cases is scaring them unnecessarily. So much has changed in the past 5–10 years.

As I think I mentioned earlier in this thread or another, my family doctor has told me to start planning for old age again (I'm 61, and was diagnosed with stage 4b prostate cancer at age 56). She's more worried about the long-term risk of metabolic syndrome than the prostate cancer itself now. My oncologist wishes he wasn't stuck seeing me every 3 months, since nothing much ever happens ("yep, you're still fine"), but he's stuck with it because they signed me up for the IRONMAN study back in 2021. 🙂
https://www.mayoclinic.org/diseases-conditions/metabolic-syndrome/symptoms-causes/syc-20351916

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Profile picture for im62at2024 @im62at2024

My wife and I met with the radiation oncologist Dr. Mitro for the first time yesterday and were there from 8:30 to a little after 11 but it was worth every minute. He’s the most thorough doctor I’ve ever seen and explains everything so you can understand it. It is in the bone marrow and the area is a bit over an 1”(2.7cm) in length and filling that entire area of marrow up and that’s why I'm having pain in that area of my right humerus. One of the first things he said was you're going to live a long time. His plan is to zap it 5 or 6 times with SBRT radiation. I go next week for a CT to map the cancer and when the mapping is finished we’ll start radiation which could be a week from then or so. He said the bone structure is still in really good shape because it was caught early so no need to operate to stabilize the bone. I’ll also be doing hormone therapy for 18-24 months, he said my Urologist has to decide that but will most likely be Lupron. He said I’ll have to stay on top of this because there’s always the chance it could show up somewhere else down the road so that means frequent PSA tests. He was impressed that I even knew about SBRT radiation therapy was and told him I have been on the Mayo Clinic Prostate forum for a while mostly lurking. I take it he is familiar with this forum because he said there's some guys on there that seem to know as much about prostate cancer as some doctors. He also said he wouldn't be surprised if some on here aren't retired doctors trying to help people. I was seriously impressed with the guy. I have seen so many different specialists over the years due to numerous medical issues I have including being a 37 year sufferer of Ménière's disease that had 5 hours micro surgery on my right ear for an Endolymphatic shunt in '95 that helped a lot with the vertigo but done nothing for the tinnitus and hearing loss, I had 3 or 4 level lumbar fusion in '09 that turned out to be a failure, I had C5-C7 fusion in '22 which was a resounding success but I now have another bad bone spur pressing a nerve in the C4 area that's going to have to be addressed but they won't do a thing until the cancer is under control. My point is this Dr. Mitro was a pleasure to deal with. When I went through those doors I was nervous as heck but I left feeling pretty good about it as good as having Stage 4 cancer can feel. He even explained in a little detail about how the TrueBeam linear accelerator works. I have to brag on the staff also they were extremely attentive the whole time we were there.

He said the cancer is not centered up on this cross section image of my humerus because it's several layers being shown and zoomed in 10x. He showed me other images that the cancer was perfectly centered inside the bone.

Jump to this post

@im62at2024 Don’t settle for Lupron - DEMAND Orgovyx! Better in almost every way, especially cardiac SE’s, as shown by the recent post
‘Cardiovascular Risk of ADT’.
Phil

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