11 anniversaries since diagnosis of stage 4 prostate cancer

If I understand the video I watched from a Mayo oncologist correctly, for mCSPC, in addition to treating the prostate itself (radiation or surgery) and starting on ADT and an ARSI, there are two different paths for a proactive treatment:

1. Many metastases: use chemotherapy to attack the cancer preemptively.

2. Few metastases ("oligometastatic"): apply separate radiation therapy to each of the metastases.

I had just one (large) metastasis to my spine in 2021, so at my cancer centre in Canada we took the second approach after debulking surgery to remove most of the lesion. Now it's 2024, and so far, so good.

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Notes:

mCSPC: metastatic castrate-sensitive prostate cancer (still responding to ADT)

ADT: androgen-deprivation therapy (e.g. Firmagon)

ARSI: androgen-reception signal inhibitor (e.g. Erleada)

Hibernation state is a great description since I was exposed to agent Orange in 1972, then the stage 4 cancer shows up in 2022 with pelvic lymph node involvement too. How to keep them in hibernation is the big question for me??

The doctors really do not know how long you will live with this disease. I have a friend that coming up to his 9 years anniversary. He started de novo with cancer in his lymph system and a PSA over 1400. Everyone responds to treatment differently. I just had my 2 year appointment with my oncologist and she said some patients get radiation, ADT, an ARSI (darolutamide, apalutamide, xdandi) and 6 chemotherapies (docetaxel). For some men, their PSA continues to rise and they do not respond. Even with a few metastases. On the other, some men with a higher volume of metastases receives the same treatment and their PSA drops < 0.100 and stays there for many many years. If we were all being honest, this disparity is what scares us, because you just do not know how you will respond to treatment. One man's Adenocarcinoma cancer is different that another's. This drives me crazy, because I am software developer. I deal in logic and repeatable facts. This all seems like gambling to me. Regardless, my oncologist said I have beaten all the milestones and odds. I think you know when know when you know. My cancer is not coming back. There is a small percentage of men that remain castrate sensitive for extended years and some never become castrate resistant.

My understanding is 4a is "locally advanced" - spread to pelvic nodes but not evident as distant mets.

There is a third approach for oligo metastatic disease. Treat the primary tumor with surgery or radiation, triple therapy (Darolutamise, Lupron and chemo) to systemically treat any micro metastatic disease and also radiate the few nodal or bony metastases with intent to kill all visible macro disease.

Same, I was exposed to Agent Orange, also in 1972. Stage 4a showed up in 2020. 3.8 Years after diagnosis 70 years old still going, best version level.

Mine showed up in 2022. My friend on ship with me showed up in 2020. Were both on ADT to keep PSA < .01. I think we got it in Haiphong harbor, it was in the water, and we took showers with the dioxin in the water.

Thanks for sharing that!

From what I understand, chemo for oligometastatic PCa that's still castrate-sensitive remains controversial, though it's getting more mainstream as a proactive treatment for castrate-resistant and/or high-volume metastatic cancer.

It will be interesting watching how best practices change over the next few years.

Same here. Haiphong Harbor, 1972, Operation Linebacker or Linebacker II. Thinking it was in the water, shower and gallons of water I drank on the bridge wing. Two of my shipmates have it. One's PC is mild, the other was Stage 4 and he left us two years ago.

Just to add to the conversation a bit more. My MO and his NP have been treating oligo metastatic disease, as I described in my other post, for a number of years now. In fact, a search of the literature is how I discovered them, contacted them by email which led to a Zoom consultation and then treatment in 2022. I read an article by Diane Reyes (his NP) and Ken Pienta ( my MO) titled "Total Eradication Therapy". It was a smaller series of men treated with RP/radiation of the primary, triple therapy, MDT with radiation to the few mets and pelvic radiation. This was in the initial castrate sensitive state. The ADT (Lupron) was discontinued after one year in patients with an undetectable PSA. The majority had their T return to normal levels while maintaining an undetectable PSA off all medication. I remain undetectable after completing triple therapy in 12/22 and last 3 month Lupron injection in 7/23. My T has yet to return to normal, although they say this can take a year after the effects of the ADT wear off.

You are right that this aggressive treatment is still controversial, but hitting the cancer hard in the beginning and killing as many clones and cells as possible made sense to me.

Dr. Pienta is the Director of the Johns Hopkins Brady Urologic Research Institute and holds appointments in the Departments of Urology, Medical Oncology and Molecular Biology. He has published > 300 peer reviewed articles on prostate research, diagnosis and treatment. I have total confidence in both him and Diane Reyes. I will do as they suggest. I have read on many forums patients that read literature and try to direct their own treatment to some degree. That doesn't work for me. I know just enough to be dangerous having practiced medicine for 40 years but also know enough to realize my specialists know much more than me.

Each person needs to find their own path and I wish everyone the best.