Any hopeful stage 4 storries

My husband was diagnosed in June. His P.S.A was 4.6. His gleason 3+4. So we thought his disease would be localized. But Pet Scan showed bone spread. We are terrified. Any encouraging word would be appreciated

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Profile picture for tonno @tonno

I had a psa of 240 .metastesis to bones, spine,lungs and lymph nodes.Had radiation,made positive changes and feeling quite well.Walk and work and exercise and appreciate and thank
God for every day.This disease opened my eyes.I have beaten one doctor's estimate of life expectancy.On adt s ,no chemo and enjoying life.Don't be afraid Christinadirson think positive

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Wow my psa was 59 and I thought that was high. Thank God for doctors and medicine today. Im so happy for you tonno.

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Profile picture for asolidrock @asolidrock

Wow my psa was 59 and I thought that was high. Thank God for doctors and medicine today. Im so happy for you tonno.

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@asolidrock As far as I understand, there's not a one-to-one mapping between PSA and the severity of the prostate cancer, but in general, a higher PSA does indicate a more aggressive or widespread cancer. My PSA was about 68, and I almost permanently lost mobility and sensation blow my ribs because it compressed my spinal cord so rapidly.

I think the old rule of thumb during initial screening (before a person had any treatment) was that a PSA of 10 represented about a 50/50 chance of actual prostate cancer. A PSA of over 20 almost certainly meant cancer. But PSA alone was a very blunt diagnostic instrument.

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Profile picture for northoftheborder @northoftheborder

@asolidrock As far as I understand, there's not a one-to-one mapping between PSA and the severity of the prostate cancer, but in general, a higher PSA does indicate a more aggressive or widespread cancer. My PSA was about 68, and I almost permanently lost mobility and sensation blow my ribs because it compressed my spinal cord so rapidly.

I think the old rule of thumb during initial screening (before a person had any treatment) was that a PSA of 10 represented about a 50/50 chance of actual prostate cancer. A PSA of over 20 almost certainly meant cancer. But PSA alone was a very blunt diagnostic instrument.

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There is a lot I didn't know. I had prostrate surgery but only went to 1 fu appointment shame on me

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Profile picture for asolidrock @asolidrock

I had stage 4 mestatic prostrate cancer. It had spread to pelvic area shoulder and back. Jeff Marc encouraged me to see oncologist. As of now my last PET scan didn't show anything my last 5 Psa levels were undetectable. So as Jeff Marc says its now treatable. This is a very good support who are well informed and very encouraging. Im so thankful i found this support group.

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@asolidrock Jeff has helped out so many people !! Me too. His knowledge is remarkable..got more info early on from him rather than oncologists.

I am Gleason 8 N1 ( 2 lymph nodes) PSA was 61- went to .05 in 5 weeks on ADT last August and from October on <.02. So far so good. Prob another yr of ADT..did 45 IMRT last fall.

Right now, I am battling a bit of lymphedema in both lower legs from IMRT...PC isnt easy. Can be a battle but so many new medical advances, I hope soon we get a real game changer that is easy to take and suppresses all the cancer immediately.

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Profile picture for northoftheborder @northoftheborder

@asolidrock As far as I understand, there's not a one-to-one mapping between PSA and the severity of the prostate cancer, but in general, a higher PSA does indicate a more aggressive or widespread cancer. My PSA was about 68, and I almost permanently lost mobility and sensation blow my ribs because it compressed my spinal cord so rapidly.

I think the old rule of thumb during initial screening (before a person had any treatment) was that a PSA of 10 represented about a 50/50 chance of actual prostate cancer. A PSA of over 20 almost certainly meant cancer. But PSA alone was a very blunt diagnostic instrument.

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Well I'm just thankful you are doing good.

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Profile picture for xahnegrey40 @xahnegrey40

@asolidrock Jeff has helped out so many people !! Me too. His knowledge is remarkable..got more info early on from him rather than oncologists.

I am Gleason 8 N1 ( 2 lymph nodes) PSA was 61- went to .05 in 5 weeks on ADT last August and from October on <.02. So far so good. Prob another yr of ADT..did 45 IMRT last fall.

Right now, I am battling a bit of lymphedema in both lower legs from IMRT...PC isnt easy. Can be a battle but so many new medical advances, I hope soon we get a real game changer that is easy to take and suppresses all the cancer immediately.

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🙏

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5 Years & still going at 76
Reached stage IV over 2-year covid shutdown
Metastasized to bones, not endocrine/lymphatic system, lucky me!
Eligard & Erleada
PSA <0.01%

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I was diagnosed after my annual check-up in February, 2025. As I recall, my primary physician said “If you want to have a PSA test, Medicare will cover it, but that’s up to you.” I was 67 years old at the time and, because no medical professional stressed the importance of having an annual PSA, I never had one. Turns out, my PSA was 67 (my age at the time) and my Gleason score was 4 + 5=9 but I was asymptomatic.
PET scan showed metastasis to the lymph nodes and bowel but no bone Mets.
A urology nurse advised my wife to start shopping for funeral homes - she even had a list of ones she recommended - and she said I should apply for a spot in hospice care. I was a little rattled by this, of course.
Up to that point, I had been an athlete and I figured that, if I survive this, my days of competing were over but that would be a small concession if treatment could prolong my life.
I went through some dark times when it took an extraordinary effort to workout but a physician friend assured me that things would get better and I should continue to train even when I didn’t feel like it.
Fifteen months later, while still taking oral anti-androgens and receiving Lupron infusions every three months, I was back on the cycling circuit and doing well so life continues unabated post diagnosis.

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Profile picture for madisonman0326 @madisonman0326

I was diagnosed after my annual check-up in February, 2025. As I recall, my primary physician said “If you want to have a PSA test, Medicare will cover it, but that’s up to you.” I was 67 years old at the time and, because no medical professional stressed the importance of having an annual PSA, I never had one. Turns out, my PSA was 67 (my age at the time) and my Gleason score was 4 + 5=9 but I was asymptomatic.
PET scan showed metastasis to the lymph nodes and bowel but no bone Mets.
A urology nurse advised my wife to start shopping for funeral homes - she even had a list of ones she recommended - and she said I should apply for a spot in hospice care. I was a little rattled by this, of course.
Up to that point, I had been an athlete and I figured that, if I survive this, my days of competing were over but that would be a small concession if treatment could prolong my life.
I went through some dark times when it took an extraordinary effort to workout but a physician friend assured me that things would get better and I should continue to train even when I didn’t feel like it.
Fifteen months later, while still taking oral anti-androgens and receiving Lupron infusions every three months, I was back on the cycling circuit and doing well so life continues unabated post diagnosis.

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@madisonman0326 So many of us got the "start preparing to die" speech (or more empathetic versions thereof) with our de-novo stage 4 diagnosis. There are no guarantees, and it's important to remember that some people aren't still don't respond well to new treatment strategies, but the data they're using for life expectancy is OLD.

These days, you're not deluding yourself if you don't just give up after a stage-4 prostate cancer diagnosis. It is entirely reasonable to hope, and to keep imagining yourself living to old age. 10+ years ago, that might have been self-delusional, but not any more.

Keep on cycling!

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Profile picture for madisonman0326 @madisonman0326

I was diagnosed after my annual check-up in February, 2025. As I recall, my primary physician said “If you want to have a PSA test, Medicare will cover it, but that’s up to you.” I was 67 years old at the time and, because no medical professional stressed the importance of having an annual PSA, I never had one. Turns out, my PSA was 67 (my age at the time) and my Gleason score was 4 + 5=9 but I was asymptomatic.
PET scan showed metastasis to the lymph nodes and bowel but no bone Mets.
A urology nurse advised my wife to start shopping for funeral homes - she even had a list of ones she recommended - and she said I should apply for a spot in hospice care. I was a little rattled by this, of course.
Up to that point, I had been an athlete and I figured that, if I survive this, my days of competing were over but that would be a small concession if treatment could prolong my life.
I went through some dark times when it took an extraordinary effort to workout but a physician friend assured me that things would get better and I should continue to train even when I didn’t feel like it.
Fifteen months later, while still taking oral anti-androgens and receiving Lupron infusions every three months, I was back on the cycling circuit and doing well so life continues unabated post diagnosis.

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@madisonman0326 "A urology nurse advised my wife to start shopping for funeral homes - she even had a list of ones she recommended - and she said I should apply for a spot in hospice care."

That is so stupid & irresponsible as to be almost comical. Almost like a car salesman telling you that you needed to replace your otherwise good car because it needed a major repair.

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