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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On July 27, 2022, I was diagnosed with Stage 4 high-volume, bone-only metastatic prostate cancer. My initial scans lit up like a Christmas tree, and a bone biopsy confirmed the diagnosis. The pain in my spine, hips, and ribs was severe, but fortunately, the cancer has never spread to my organs or lymph nodes. My treatment was aggressive. I started with 30 days of bicalutamide, followed by Eligard injections, Darolutamide, and 10 rounds of chemotherapy instead of the standard six. I also had 10 radiation cycles to my spine and five to my ribs. Most recently, I completed 20 rounds of pelvic radiation for "clean-up" to improve long-term survival. The chemo phase was terrifying because my PSA fluctuated, causing my oncologist some concern. But 11 months after diagnosis, my PSA became undetectable—and it has stayed that way for four years now. My doctor calls me a "super responder." Before my diagnosis, I had my gallbladder removed. Doctors blamed all my pain on that and missed the cancer on early CT scans. It was a painful, difficult time, but I am glad it is behind me. Today, I embrace both science and faith. While adenocarcinoma affects us all differently, I credit Jesus for giving me the strength to endure treatments that made my cancer indolent. To maintain my strength and stay here for my family, I eat a plant-forward diet and push through physical therapy to rebuild muscle. Everyone’s journey is different, but I stand firmly in my faith that I am healed. There is always hope.

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My first glimmer of hope came from my uncle. He's a retired physician and surgeon who still keeps up on the latest research. He has always been very blunt, and not sugar-coated anything. If you're going to die, he'll tell you straight out.

When my mother told him about my stage 4 bone-metastatic prostate cancer, he told her "Oh, he'll be fine." That's the first time I heard a medical person said I wouldn't be dying soon. Later, my radiation oncologist and family doctor started telling me the same thing. I was so prepared to die when during those long nights awake in the hospital bed, writing notes on my finances and insurance to help my family after I was gone, that it took a while to really trust it wasn't going to happen (at least, not any time soon). I still need reassurance sometimes, nearly 5 years later.

Things have changed that fast and that recently: I was diagnosed just as the change was happening at the bigger cancer research centres. I doubt patients now go through what I went through, but back then, they were still giving us the life expectancy stats from before new treatment approaches like doublet therapy, MDT, PDRT, etc.

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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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I have been stage 4 metastatic to the bone high volume for over 4 years. I became undetectable 10 to 11 months after diagnosis and have remained undetectable castrate sensitive. I will get my next PSA in 3 months. Men are remaining castrate sensitive longer, some never become castrate resistant, and the stats are showing men living 10+ or more now.

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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

Originally diagnosed at 67 years old with GG3 Gleason 4+3 intermediate risk in fall 2023. I was then diagnosed at 68 years old with stage 4a in January 2025. Just six months after an IRE ablation procedure when pelvic lymph node involvement was detected from a psma-pet scan. Prescribed 40 pelvic IMRT and Orgovyx and Zytiga w/Prednisone for 2 years. I have six months yet to go on the ADT and ARPI. My PSA has been undetectable for about a year now. I'm hoping it will continue that way after cessation of the drugs.

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Darolutamide (Nubeqa) is a miracle drug.

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Profile picture for wooldridgec @wooldridgec

Darolutamide (Nubeqa) is a miracle drug.

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@wooldridgec Yes, all the 2nd generation ARSIs (so-called "-lutamides") are pretty amazing.

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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

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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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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Profile picture for christinadiersen50 @christinadiersen50

@jeffmarc thank you so much for your reply, and hopefully words!

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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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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

Jump to this post

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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