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Any hopeful stage 4 storries

Posted by christinadiersen50 @christinadiersen50, Jul 28 6:32pm

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 frank1964
frank1964 | @frank1964 | Jul 29 2:00pm
In reply to @beaquilter "I wanted to start a thread about stage 4 pc. How long have you had stage..." + (show)
Profile picture for beaquilter @beaquilter

I wanted to start a thread about stage 4 pc.
How long have you had stage 4? And did you start off with that diagnosis or did it get to that later?
(My husband was diagnosed early 2025 with stage 4 and back then stats said 30% make it 5 years)
Just reply with how long you've had stage 4.
Thanks

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There are many treatment options. More INFO and discussions:
https://healthunlocked.com/advanced-prostate-cancer/search/posts

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Profile picture for prbutler
prbutler | @prbutler | Jul 29 2:11pm
In reply to @beaquilter "I wanted to start a thread about stage 4 pc. How long have you had stage..." + (show)
Profile picture for beaquilter @beaquilter

I wanted to start a thread about stage 4 pc.
How long have you had stage 4? And did you start off with that diagnosis or did it get to that later?
(My husband was diagnosed early 2025 with stage 4 and back then stats said 30% make it 5 years)
Just reply with how long you've had stage 4.
Thanks

Jump to this post

Diagnosed in November of 2025
PSA of 6000
Metastatic PC spread to multiple bones, lymph nodes, and lungs
Gleason 9
55 years old

Triple therapy of Eligard, Nubeqa, Docetaxel (completed late march)
28 Rounds of radiation completed beginning of June

Last PSA was 1.8. Next blood work in 4 weeks.
April scan showed lung spots gone and everything else greatly reduced or gone (other than prostate which still lit up pretty good)

Feel good other than extreme joint aches and pains, hot flashes, and fatique. Working full time and exercise every day (walking, Peloton, strength)

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Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | Jul 29 2:20pm
In reply to @tonno "I have been on firmagon shots and xtandi pills for over 2 years.Diagnosed with stage 4..." + (show)
Profile picture for tonno @tonno

I have been on firmagon shots and xtandi pills for over 2 years.Diagnosed with stage 4 with metastesis to bones lungs and lymph nodes.Did radiation to my spine immediately after
diagnosis because they said I would be confined to a wheelchair.I refused chemo opting for
a change in diet .I walk for over 2 hours on most days and try to keep moving and busy.
Dr.Scholz says stats reveal that stage 4 patients can take a break from adt and return later
safely.I am 65 years pld and curious if anyone tried this?

Tonno

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@tonno
I know a lot of people that have done this when their PSA has stayed undetectable for a year. For some, it works for a long time for others not so much.

Your problem is, without Pluvicto or chemo the lung mets can be a problem That causes your PSA to rise quickly.

You can have all the other Mets zapped with SBRT radiation.

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northoftheborder | @northoftheborder | 6 days ago
In reply to @asolidrock "Wow my psa was 59 and I thought that was high. Thank God for doctors and..." + (show)
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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2 replies
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asolidrock | @asolidrock | 6 days ago
In reply to @northoftheborder "@asolidrock As far as I understand, there's not a one-to-one mapping between PSA and the severity..." + (show)
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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ecurb | @ecurb | 6 days ago
In reply to @readandlearn "I was diagnosed with stage 4 in Nov 2021. I was then put on hormone therapy...." + (show)
Profile picture for Read & learn & live! @readandlearn

I was diagnosed with stage 4 in Nov 2021.

I was then put on hormone therapy. Side effects are mild. In 2023 I moved to another state (I had a moving company move the big stuff).

Despite being warned not to buy a two-story house at my age, I go up & down the stairs so many times a day that I don't count.

I'm living a normal healthy life five years later at 81. I mow my own lawn & walk 1.5 miles a day when the weather permits.

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@readandlearn your Hardcore for a man of 81 years. Impressive!!

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xahnegrey40 | @xahnegrey40 | 6 days ago
In reply to @asolidrock "I had stage 4 mestatic prostrate cancer. It had spread to pelvic area shoulder and back...." + (show)
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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1 reply
Profile picture for asolidrock
asolidrock | @asolidrock | 6 days ago
In reply to @northoftheborder "@asolidrock As far as I understand, there's not a one-to-one mapping between PSA and the severity..." + (show)
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 asolidrock
asolidrock | @asolidrock | 6 days ago
In reply to @xahnegrey40 "@asolidrock Jeff has helped out so many people !! Me too. His knowledge is remarkable..got more..." + (show)
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.

Jump to this post

🙏

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Profile picture for hotrod432
hotrod432 | @hotrod432 | 6 days ago
In reply to @beaquilter "I wanted to start a thread about stage 4 pc. How long have you had stage..." + (show)
Profile picture for beaquilter @beaquilter

I wanted to start a thread about stage 4 pc.
How long have you had stage 4? And did you start off with that diagnosis or did it get to that later?
(My husband was diagnosed early 2025 with stage 4 and back then stats said 30% make it 5 years)
Just reply with how long you've had stage 4.
Thanks

Jump to this post

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%
No testosterone = no prostate cancer growth.
Many side effects but still going strong.
We all walk in our own shoes, on our own paths.
Godspeed in yours!

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