Prostate cancer

Posted by mpersonne @mpersonne, 2 days ago

Today is the day i discuss my biopsy results with my doctor. So all day ill be on pins and needles..

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

Profile picture for odie10 @odie10

@odie10 I meant to add that Stage 4 prostate cancer is considered incurable, yes?

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@odie10 wrote ❝Stage 4 prostate cancer is considered incurable, yes?❞

True, but if you make it to 10 years with no recurrence, some doctors will consider it a "statistical cure." The exact number of years may vary by practitioner or institution, and some may prefer not to use the term.

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Profile picture for brianjarvis @brianjarvis

@jeffmarc These 20- and 30-year numbers aren’t bad.

By comparison, in 1995 I had knee surgery; in 2018 I had a recurrence of that same knee problem and had the same knee surgery again. I consider those 23 years a successful surgery (despite having to repeat it). If I can get 23 more years out of that 2018 knee surgery, that’ll be another successful treatment.

Similarly, if I can get 20-30 years out of my 2021 prostate cancer (proton) radiation treatments, I’ll consider that a success.

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@brianjarvis
In those nine meetings I attend every month there are frequently people that have their cancer come back after 3-10 years. That’s why I mentioned my 3.5 year reoccurrence.

The long term reoccurrences are unusual. Definitely more successful as you mention.

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Profile picture for jeff Marchi @jeffmarc

@odie10
Prostate cancer can go a dormant. I know one guy with a Gleason nine that had it come back 30 years after his treatment. Another guy had to come back after 20 years. These type of reports aren’t unusual. I go to nine online advanced prostate cancer meetings every month and here many different types of cases.

Mine came back 3 1/2 years after my surgery.

There’s no way to see all of the micro metastasis in someone’s body. The PSMA PET scan can’t see metastasis that are 2 1/2 mm and some doctor say even 5 mm are hard to see.

Once you’ve had it spread to other parts of your body, it’s in your bloodstream. It’s hard to eliminate it from there, There really isn’t any treatment besides chemo or Pluvicto that could do it. Even after those treatments reoccurrences is very common.

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@jeffmarc Thank you. I'm getting mixed messages from my docs. One is saying "cured" after five years and one says it will eventually kill me because I have no other co-morbidities, probably 7-8 years out. It feels like mixed messaging...

Be well.

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Profile picture for northoftheborder @northoftheborder

@odie10 wrote ❝Stage 4 prostate cancer is considered incurable, yes?❞

True, but if you make it to 10 years with no recurrence, some doctors will consider it a "statistical cure." The exact number of years may vary by practitioner or institution, and some may prefer not to use the term.

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@northoftheborder
Yes, I guess that's what I'm hearing with slight nuances between docs. Thanks. Be well.

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Profile picture for odie10 @odie10

@jeffmarc Thank you. I'm getting mixed messages from my docs. One is saying "cured" after five years and one says it will eventually kill me because I have no other co-morbidities, probably 7-8 years out. It feels like mixed messaging...

Be well.

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@odie10 wrote ❝…eventually kill me because I have no other co-morbidities, probably 7-8 years out❞

Yes, back in 2021 they told me usually I could expect to live 3–5 years more, but maybe 7 if I was lucky because I was 56 at the time and otherwise healthy.

Here's the thing: those estimates are based on old SEER data, some of it tracking patients who started treatment many years ago. I can't say it's wrong, but with all the major changes in the prostate-cancer-treatment landscape over the past few years, I wouldn't assume it's right, either.

So far, I'm not seeing the disease progression they told me to expect back in 2021. My cancer hasn't become castrate resistant (that was supposed to happen in 18–24 months). My PSA has remained undetectable. I haven't needed chemotherapy or Pluvicto. My energy level and general health have beem improving year to year, despite being on ADT and Apalutamide long term.

In fact, the main reminders that I still have stage 4 prostate cancer (and always will) are the quarterly blood tests and the bucket of pills I have to swallow every day. 🤷

Just one person's experience, of course, but there are many others here in the forum with stage 4 and similar stories. See also this 2024 Scientific American article:
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/
Best of luck!

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Profile picture for odie10 @odie10

@jeffmarc Thank you. I'm getting mixed messages from my docs. One is saying "cured" after five years and one says it will eventually kill me because I have no other co-morbidities, probably 7-8 years out. It feels like mixed messaging...

Be well.

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@odie10
The statistics they use to tell you how long you’re going to live are based on 10 to 15-year-old information. Since that time we’ve had some pretty incredible drugs come out that allow us to live much longer.

Used to be if you became castrate resistant your median survival was two years. That happened to me six years ago. Between Zytiga and Nubeqa The drugs have been able to keep me undetectable. After three years on Nubeqa I’ve been undetectable for 26 months. I’ve had prostate cancer for 16 years and started off with surgery. I also have BRCA2, which makes my cancer much more aggressive.

So should you believe your doctors statistics? Your doctor should not even have given you a life expectancy. I know so many people that have gone twice as long and more past what they were told their life expectancy would be.

You’re not going to be cured if you start off with an aggressive case of prostate cancer. It may or may not come back soon, But if it does come back, there are some drugs that will keep you going for years, Like they have done for me. There’s also new drugs coming out every few years, So expect to be around for a while.

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Profile picture for northoftheborder @northoftheborder

@odie10 wrote ❝…eventually kill me because I have no other co-morbidities, probably 7-8 years out❞

Yes, back in 2021 they told me usually I could expect to live 3–5 years more, but maybe 7 if I was lucky because I was 56 at the time and otherwise healthy.

Here's the thing: those estimates are based on old SEER data, some of it tracking patients who started treatment many years ago. I can't say it's wrong, but with all the major changes in the prostate-cancer-treatment landscape over the past few years, I wouldn't assume it's right, either.

So far, I'm not seeing the disease progression they told me to expect back in 2021. My cancer hasn't become castrate resistant (that was supposed to happen in 18–24 months). My PSA has remained undetectable. I haven't needed chemotherapy or Pluvicto. My energy level and general health have beem improving year to year, despite being on ADT and Apalutamide long term.

In fact, the main reminders that I still have stage 4 prostate cancer (and always will) are the quarterly blood tests and the bucket of pills I have to swallow every day. 🤷

Just one person's experience, of course, but there are many others here in the forum with stage 4 and similar stories. See also this 2024 Scientific American article:
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/
Best of luck!

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@northoftheborder
Stay blessed!

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Profile picture for jeff Marchi @jeffmarc

@odie10
The statistics they use to tell you how long you’re going to live are based on 10 to 15-year-old information. Since that time we’ve had some pretty incredible drugs come out that allow us to live much longer.

Used to be if you became castrate resistant your median survival was two years. That happened to me six years ago. Between Zytiga and Nubeqa The drugs have been able to keep me undetectable. After three years on Nubeqa I’ve been undetectable for 26 months. I’ve had prostate cancer for 16 years and started off with surgery. I also have BRCA2, which makes my cancer much more aggressive.

So should you believe your doctors statistics? Your doctor should not even have given you a life expectancy. I know so many people that have gone twice as long and more past what they were told their life expectancy would be.

You’re not going to be cured if you start off with an aggressive case of prostate cancer. It may or may not come back soon, But if it does come back, there are some drugs that will keep you going for years, Like they have done for me. There’s also new drugs coming out every few years, So expect to be around for a while.

Jump to this post

@jeffmarc
Stay blessed Jeff!

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Hi
I didn't see if you got the results, nor your PSA results.
My husband's nightmare started pretty much a year ago exactly.
He went to the doctor because he was peeing frequently, bloodwork then showed PSA almost 300! Biopsy showed most gleason scores are 8 and 9s total.
Oncology started the triple therapy, two different ADTs and chemo.
Today his PSA was 2.7
It has been a struggle to say the least!
He has no other things wrong with him, eats pretty perfectly and has always lifted weights! Still does, but is weaker and more tired and gets hot flashes, still doesn't sleep right, but he's alive!
Initially they said 35% make it 5 years, now I think it's more like 50% but still!
It's such an odd feeling to know my husband is terminal! Depressing!
He's 56 now and I'm 48, we still have kids at home! I can't image being a widow so young!

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I know the feeling. But just think you’re in a good position be you’re getting the info you need to move forward. Whatever you hear just know, this is a journey not a sprint. Allow yourself the space and grace to feel every single emotion. You got this!

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