I had an appointment with my general doctor yesterday. We talked a bit about my diagnosis (7 months ago). I said it had been quite stressful, getting a terminal diagnosis. He replied that I needn’t use the term terminal. He has a patient still going after being diagnosed, metastatic, 28 years ago at the age of 56. He’s still living his life fairly normally, on Lupron and Bicalutamide, which he cycles on and off, due to anaemia.
That gave me tremendous hope, especially as medications have come on so much since then. Maybe others know of similar longevity with a metastatic at diagnosis situation?
I know it’s not necessarily usual… but it is possible. Fight on fellow warriors!
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Broccoli24
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Wonderful question Broccoli. And interesting story told by your doctor about the guy who survived now almost 30 years with metastatic prostate cancer. It's an anecdote. Is it a data point too?
The guy has cycled on and off Lupron and Bicalutamide - because of anemia. But cycling on and off is sort of BAT. Is it possible that this is why the guy never developed resistance? Because the evolution to resistance was disrupted by the cycling?
my DX was October 2018 … first recommendation of care was immediate entry into inpatient hospice. Said I had only a couple - few weeks to live. Here I am 6 years 3 month ( more or less ) later …STILL hanging in there on my initial Lupron xtandi treatment and still going. There are a “ lot “ of guys on here that have beat the 5 - 6 year projected limit commonly seen. You never really know when you will croak with all this stuff, not you or anyone else either. Men seem to be living longer nowadays, than the 2-3 years expectancy when I started and the 18 months - 24 months expectancy before that.
Everyone on this group ( mostly ) are croakers with terminal DXs. Stage4advanced , it’s what this group is all about and all of us know we are living on borrowed time. We get used to it and move on. My friend Mark lived 22 years with a horrible case of this disease.
I try to enjoy my good fortune , now, and not waste my “ good fortune” time left. Now is the time to go out for QOL with the family . The longer we last, the less this is likely to be possible.
IMHO, with what I’ve seen on this group, you are “ likely “ to have a few to many more good years at your disposal.
A croaker, my friend? I've always wanted to be a bullfrog, being from the bayous. And there was a fish called a croaker that I always caught when fishing from the pier at Pass Manchac; they always swallowed the hook.
Oh. You meant (ahem) that other croaker! Sad but true. I guess the date is what matters.
lol ….. back immediately after World War II , mid to late 40s, a lot of the vernacular in middle America had a LOT of slang words not used these days. Words like flivver, reet, sooner ( a type of hound applied to a person ), a gas , doozy, etc. . All I can think of quick, probably dozens more.
Croaker was one of those words. It referred to the little sound a person supposedly makes when he passes. ( in the 32 years I worked at the medical centers, I’ve been present when 100s of people pass. They didn’t “ croak “ , they mostly got the death rattle gurgle or exhaled deeply if they made any sound at all, most were silent. ) mostly croaking , croaker , croaked etc. were nicer ways and social tools to avoid talking directly about death. ( google it, its in there ) .
You don’t hear croak ( ed, ing , er ) often in these times. lol guess I’m a “ throw back “ Rotflol.
I hope your day is a good one brother ( one day at a time )… good to have you engage and chime in. More is always better. Socializing with peers is a good thing for “ us “ guys. We are “ special “ , regulars … normies ( lol ) aren’t capable of understanding like we are.
The images all that is conjuring up …. Well in my head ( see what I did there lol ) are both kinda strange and …. Well …. Weird. Rotflol. Both thing I love it buddy.
My husband is going on 8 years of a de novo metastatic diagnosis. The stats then said he had 12-18 months with his diagnosis when he was first diagnosed. I think the diagnosis details (gleason, type, and aggressiveness) and initial treatment matter when comparing how long someone has been able to kick the can down the road. Also- everyone's 'body makeup' is so different. Definitely great for giving hope to hear someone lived 28 years and going with it. But the researcher in me would want more info on that guy's specifics. That being said, there are more and more guy's living longer as treatments are evolving.
Based on your bio and depending on treatments, I assume you went through radiation therapy, you may be even cured - far away from terminal. I decided to go a similar way: followed all recommended therapies AND intensified exercising and switched to plant based diet plus fish. Said goodbye to stress and live a really good life. Day by day.
Just finished radiotherapy… and hoping it kicks things into touch for a long while yet.
Yes, SoC and doing all I can besides, like you. It’s a fight… and I’m prepared to have it…. But also just really appreciating life and being as unstressed as possible. It’s strange, but I find that mixed in with all this strangeness is a kind of contentedness I never had before. Whether that’s a keener understanding and gratitude for life, or something else, I’m not sure… but it helps. Day by day!
You can survive this. Most if all this is making the right choices. I was told I had 18 months to live 12 years ago. Don't let the Scarecrows get to you.
Well, they just never know. This October will be a full 30 years for me from diagnosis with Gleason 3+4. Surgery, eventually lymph node Mets and SBRT. Getting another CT scan, then maybe another PSMA scan in two days.
Medical changes? - Regardless of what new tests show, I have waited and saved a lot of medical bullets for any upcoming battles.
Lifestyle changes? - Better whiskeys, better cuts of steak, more fishing and camping.
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What do you make of this?
seeking feedback on my case
UPDATE on my dad. A story of hope.❤️ #advancedPC
He lived a wonderful life
