Any hopeful stage 4 storries

Posted by christinadiersen50 @christinadiersen50, 6 days ago

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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lag | @lag | 1 day ago

In reply to @beaquilter "@beaquilter It seems like the longest is 8 years at stage 4 (Of the ones who..." + (show)

@beaquilter My husband has been Stage 4 with spinal mets since 2011, so much longer than eight years.

beaquilter | @beaquilter | 1 day ago

In reply to @lag "@beaquilter My husband has been Stage 4 with spinal mets since 2011, so much longer than..." + (show)

@lag ahh ok. How's he doing now?

northoftheborder | @northoftheborder | 1 day ago

In reply to @beaquilter "Hey my husband was diagnosed stage 4 a year and a half ago and each test..." + (show)

@beaquilter

Hey
my husband was diagnosed stage 4 a year and a half ago and each test got worse and worse. First he just went to the dr because he peed often, thought it was just an enlarged prostate and getting older (55) and the dr agreed but did a PSA test just in case, it came back almost 300! CANCER! then he got a pelvic CT that showed it outside prostate, then urologist told us it's stage 4 and wanted to biopsy, gleason showed almost all 8 and 9s, then oncology wanted a PSMA scan and that showed it ALL over his body, not only prostate and that area but lungs, lymph nodes and bones! 30% make it 5 years with that diagnosis!
They started him in Firmagon right away (and meanwhile he googled everything and stuffed his face with lots of supplements like Ivermectin and Fenbentosol and more) well that wrecked his liver to the point of blood work showed liver failure! he felt fine and looked fine, but he quit the supplements and his liver returned to normal then they started him on zytiga and prednisone and over the summer he did docetaxel chemo! the PSMA in the fall, after the chemo showed great improvement and the most recent one this spring showed more improvement (not much compared to 6 months ago but still better)
He still gets his firmagon injections every month (didn't want to switch to Lupron) and takes his zytiga pills etc daily. He's always worked out- lifted weights and continue that, he's also eating pretty perfectly and does stuff around the house to keep busy.
Of course there's no sex life and he has hot flashes and night sweats, but so do I (48) so we got a bed jet recently and he's helped with night sweats but he still doesn't sleep well at all. I guess without testosterone you don't sleep well.... his PSA is 0.05 so that's good, though every month we're nervous because they initially guessed that ADT would work for 18months and then PSA would start going up again.
we'll see
It sucks and it's depressing! Some says I cry over it, some days I'm mad, some days I fret becoming a widow, some days he wants to end it so I can move on with my life and find someone else! It sucks!

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@beaquilter I'm glad to hear that your husband is doing so much better. Adding Zytiga to the Firmagon may prevent castrate resistance for longer. I can't remember if you were unable to use a -lutamide because the insurance wouldn't pay for it, or because they cause complications for your husband, but ADT + a 2nd-generation ARSI (-lutamide) delay castrate-resistance significantly for many patients (sometimes indefinitely).

northoftheborder | @northoftheborder | 1 day ago

In reply to @lag "@beaquilter My husband has been Stage 4 with spinal mets since 2011, so much longer than..." + (show)

@lag Both my first oncologist and my family doctor also have patients who've lived with stage-4 prostate cancer for well over a decade (that's about how the long new treatments have been available — Zytiga (Abiraterone) became available in 2011, and Xtandi (Enzalutamide) in 2012 — so we don't know how much longer they'll last; possibly until they die of old age).

christinadiersen50 | @christinadiersen50 | 1 day ago

In reply to @lag "@beaquilter My husband has been Stage 4 with spinal mets since 2011, so much longer than..." + (show)

@lag so happy to read that!

May I inquire to what his treatment journey has been like?

wooldridgec | @wooldridgec | 1 day ago

Keep in mind that everyone is different and the cancer for every man is different. Nobody can can tell you how long your husband will live with metastatic prostate cancer and they should not because THEY DO NOT KNOW!!! With that said, overall survival for men with metastatic prostate cancer continues to increase with all the novel treatments.

asolidrock | @asolidrock | 1 day ago

In reply to @tjs911 "@asolidrock I was on the ADT regimen (pills and shot) for about 2 /1/2 years. Last..." + (show)

So you are not taking the shot either. When was your last pet scan and how was it. I was told to never stop the pills or the shot.

tjs911 | @tjs911 | 1 day ago

Taking no ADT meds since June of 2025 (after 2.5 years). PSA remains undetectable but I read on the forum of a study that mets can occur without any elevation in PSA ... so I talked my MO into ordering a PET scan. PSMA-PET on May 14, 2026: "tracer uptake along the lateral aspect of the left prostate lobe raises suspicion for viable tumor. Recommend consideration for further evaluation with prostate protocol MRI pelvis examination." Had the MRI a month later: "IMPRESSION:
PIRADS category 2. No concerning prostate findings are identified." That impression came with great relief but I recognize that the tumor will likely come back at some point and I'll be back on the ADT meds. Ugh!!

todd7017 | @todd7017 | 1 day ago

In reply to @mjp0512 "Welcome and so very sorry you had to find your way here. I am a stage..." + (show)

@mjp0512
Thanks...Just got my biopsy scores of 7,8,9. Feels like a end is just around the corner. Hoping to have Mayo approve me as a client at this point.