11 anniversaries since diagnosis of stage 4 prostate cancer

Posted by mccsjm @mccsjm, May 25 12:47am

Diagnosed at 63, I did not have the confidence at that time to believe I would live another 10 years. Yet, I just completed another follow-up visit in the past two weeks. My semiannual routine includes a blood draw for PSA and metabolic panel, followed by a visit to my oncologist's office. Given the many years of hormone therapy, they added a DEXA scan to check my bones.

Overall, they are happy with the results. PSA remains undetectable (might not be the most sensitive assay. My lipid levels remain elevated, so lipid-lowering medication may be inevitable in the near future, but it's not the end of the world. I hope my experience can encourage my fellow warriors. Living with prostate cancer is entirely achievable.

I also learned that the website for clinical trial matching that my oncologist pointed me to previously (inforeach.org) has added search for treatments recommended by clinical guidelines. It's quite intriguing as you can check if your treatment is consistent with the standard of care. Sharing this information for anyone who may want to check it out.

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

@northoftheborder

Almost everything you read online about stage 4b prostate cancer is out of date now (assuming you're getting the latest treatments). I'm not trying to be a Pollyanna and pretend there's nothing to worry about — stage 4b is a tough ride — but prostate-cancer treatment has gone through a seismic shift in the past 5+ years. As an article in last month's Scientific American said

«These new strategies have begun to transform this once rapidly fatal disease into a chronic condition that people can live with for years or even for their full life expectancy.»
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/
So while there are no guarantees, it's no longer naïve to keep hoping. When I went to the Canadian Cancer Society's website to read about stage 4b when I was initially diagnosed in 2021, the advice was basically "Learn acceptance, put your affairs in order, and prepare to die" (in more-polite words), which was awful to read; fortunately, within a year my onco team was telling me a very different story.

Will I make old bones? Maybe not. But it's no longer a pipe dream.

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Well said 👍🙏

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There is a certain amount of CYA in these publications etc. However, for those who had not gone through the process, they do cause some unnecessary anxiety. I have given up on another similar site because there is one member who loves to throw these old studies articles out, without qualification. Who needs that?

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@glt

Hey Steve. I also have 4 B that has spread to Pelvic region, Femurs, Lymph nodes, back etc. I have been looking for alternative treatments to docetaxel, but there does not seem to be alternative treatment. I made appt to go to MD Anderson in Houston but thinking there is no silver bullet.

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I visited MD Anderson last week for second opinion. I have Stage 4 advanced mCRPC. My oncologist there told me their front line treatments there are docetaxel and Pluvicto, which are treatments that are already available to me now. There may be a clinical trial that you would qualify for.

He did suggest that I have genetic testing that may produce info that may aid treatment.

I like the idea that I also have a MD Anderson oncologist that I can consult with in the future.

Best of luck

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At the end of the day, the medical team, the clinic you chose which has the experience that counts. Some of them treat thousands of patients every year for many decades. They have the confidence of what works for you.

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diagnosed at age 54 PSA 9.5, prostatectomy, 36 radiation treatments, no detectable PSA for 6 years, then 9 plus years lupron (I hate it) four years without it. PSA doubled in five months. PSMA showed cancer in lymph system but MRI did not show it, had lupron shot and waiting for another MRI. One doctor says I probably have another ten years.
Now at age 74 I am happy I was able to raise my children, I am in bonus years!

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@glt
Are the docetaxel and Pluvicto given concurrently or consecutively?

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@wellness100

There is a certain amount of CYA in these publications etc. However, for those who had not gone through the process, they do cause some unnecessary anxiety. I have given up on another similar site because there is one member who loves to throw these old studies articles out, without qualification. Who needs that?

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I with you on that! I am a retired Radiologist so I know more than the basics and know the Imaging side inside and out. I can read and understand the literature pretty well. But, prostate cancer and its current state-of-the-art treatment is very complicated. I know maybe a tenth of what my experienced MO at Johns Hopkins knows about prostate cancer and its treatment. I believe in being informed and a co-decision maker (it's our life), but when some laypersons start believing they know more than knowledgeable, experienced MO/RO/Urologists at a COE, they are off the reservation. Articles that came out even a few years ago may be outdated. Find a physician you trust, ask questions, decide how aggressive you want the treatment to be but let the treating doctor drive the bus. My opinion, anyway.

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@rick137

@glt
Are the docetaxel and Pluvicto given concurrently or consecutively?

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It seems to depend on the patient's treatment history and physical condition plus any comorbidities, as well as how long before Pluvicto became available the patient began prostate cancer treatment. Many patients receiving Pluvicto have done so in the recent past because it was only approved by the FDA for general use in 2022, which means that many patients received docetaxel well before Pluvicto. My husband is in this group: his docetaxel was in 2016, while he began Pluvicto in January 2024. Other patients were told they had to undergo chemotherapy before being eligible for Pluvicto (no longer a strict requirement), so that is what they did. On the other hand, some patients are told that docetaxel is an option after Pluvicto.

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@retireddoc

I with you on that! I am a retired Radiologist so I know more than the basics and know the Imaging side inside and out. I can read and understand the literature pretty well. But, prostate cancer and its current state-of-the-art treatment is very complicated. I know maybe a tenth of what my experienced MO at Johns Hopkins knows about prostate cancer and its treatment. I believe in being informed and a co-decision maker (it's our life), but when some laypersons start believing they know more than knowledgeable, experienced MO/RO/Urologists at a COE, they are off the reservation. Articles that came out even a few years ago may be outdated. Find a physician you trust, ask questions, decide how aggressive you want the treatment to be but let the treating doctor drive the bus. My opinion, anyway.

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Indeed. Your prescription may or may not be change over time with treatment. These studies are either a snapshot more or less, or has limited 'parameters' which may not be applicable.
What is annoying, and even dangerous is that a person who had read a few articles and assume the air of authority. Worse, when other people bring up more recent studies that is in discordant with his, then trouble starts.
Anyway, I am getting long winded.

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@retireddoc

I with you on that! I am a retired Radiologist so I know more than the basics and know the Imaging side inside and out. I can read and understand the literature pretty well. But, prostate cancer and its current state-of-the-art treatment is very complicated. I know maybe a tenth of what my experienced MO at Johns Hopkins knows about prostate cancer and its treatment. I believe in being informed and a co-decision maker (it's our life), but when some laypersons start believing they know more than knowledgeable, experienced MO/RO/Urologists at a COE, they are off the reservation. Articles that came out even a few years ago may be outdated. Find a physician you trust, ask questions, decide how aggressive you want the treatment to be but let the treating doctor drive the bus. My opinion, anyway.

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Well put. The patient chooses the destination, but the oncologist drives the bus.

That said, I don't think it's a bad thing that we patients are sharing info here. It's clear from posts that not everyone is getting the same quality of care — some of us are lucky enough to be under the care multidisciplinary teams at big research centres following the latest best practices, while others have a single small-town urologist who might or might not have kept up to date on developments over the past 5–10 years.

Knowing what questions to ask helps level the playing field a bit

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