So so many people bitch and moan about treatment. Sure, who wants it?? But NONE OF US that I’m aware of, have ever been told: ‘You’ll be dead in 18 months no matter what we do’.
That’s glioblastoma, a relentless destroyer of lives; multiple debilitating surgeries ( they take out pieces of your brain, OK?), radiation and incredibly powerful chemotherapies which make your last days not worth living.
I watched my best friend’s son die this way at age 34. I remember that he had his first brain surgery (of 5) about a month before my RARP.
He never knew that he wasn’t gonna make it - he was an athlete with a never give up mentality - and that made it even harder to watch him go thru that ordeal…
My condolences to anyone who has experienced this firsthand.
Phil
Yes, great comment. It definitely sucks to be part of this "brotherhood", but for the most part, PC is really one of the "best" cancers to have to come down with!
Always good to keep in mind how much worse things COULD be, no?
But that is a very sad story, and thanks for sharing it, Phil.
I think of two questions: what is the diagnosis (some just warrant active surveillance) and what are one’s longevity/quality of life goals. I have the hardest time convincing my (much younger) oncologists that at age 74 I anticipate < 10 years remaining and want more quality of life rather than pounding the cancer for a complete cure. Gleason 7, N1M0.
My husband at first was ready to say NO and die, it was his MANHOOD!
Lots of arguments over weeks, I have holes in my walls because I threw at chair at night screaming in the dark and being angry!
Now the attitudes have changed on both our ends.
He's fighting it with everything! My husband is 55 and stage 4 metastatic PC.... I'm 47, we still have kids at home! I'm too young to be a widow! He's too young to die, plus in the last year his parents passed away and I lost my mom two weeks after his diagnosis, so I can't deal with another loss!!
At some point we had 3 sets of ashes in our closet and I begged my husband to fight because I don't want a 4th!
Now we're hardly 6 months into it, near the end of Chemo and it's been a battle for sure...
My husband at first was ready to say NO and die, it was his MANHOOD!
Lots of arguments over weeks, I have holes in my walls because I threw at chair at night screaming in the dark and being angry!
Now the attitudes have changed on both our ends.
He's fighting it with everything! My husband is 55 and stage 4 metastatic PC.... I'm 47, we still have kids at home! I'm too young to be a widow! He's too young to die, plus in the last year his parents passed away and I lost my mom two weeks after his diagnosis, so I can't deal with another loss!!
At some point we had 3 sets of ashes in our closet and I begged my husband to fight because I don't want a 4th!
Now we're hardly 6 months into it, near the end of Chemo and it's been a battle for sure...
I feel deeply for you and your husband especially since you are both so young. I hope he finds the strength to fight this horrible cancer if not for him but you and children. I’m a young 79 yr old who had prostate surgery a year ago , every day I wish that I had refused to do anything and not give up my quality of life and enjoy what time is left . I’ve had a loving relationship for 40 yrs with my younger wife but feel like a stranger now when we go to bed at night. Wishing you and family get the help you need to survive this .
I feel deeply for you and your husband especially since you are both so young. I hope he finds the strength to fight this horrible cancer if not for him but you and children. I’m a young 79 yr old who had prostate surgery a year ago , every day I wish that I had refused to do anything and not give up my quality of life and enjoy what time is left . I’ve had a loving relationship for 40 yrs with my younger wife but feel like a stranger now when we go to bed at night. Wishing you and family get the help you need to survive this .
So far my husband is ok. Tired and achy and worn out but it comes and goes.
I told him earlier that I'd rather have a husband and no sex life than a dead husband and still no sex life!
So far my husband is ok. Tired and achy and worn out but it comes and goes.
I told him earlier that I'd rather have a husband and no sex life than a dead husband and still no sex life!
Easier for most women to give up a sex life than most men , before cancer once a week was enough for my wife since her appetite has diminished, but I was used to to 2-3 x a week. Not too many yrs ago now it’s over but my brain still feels like 50 , tough to accept
Three years ago one of my aPC buddies decided to quit treatments. He was two years in at the time. Those years were horrible. He lost his wife, and health insurance, while the bills piled up. He decided to call it good. He stopped treatments. Focused on exercise, nutrition, and updated his playlist daily. Now his life includes long walks, long bike rides, long library visits, and long coffee visits with friends every day. He is defiantly living his best version right now. He's 74. He's checked out Netherlands, and Canada for their assisted dying laws. He discovered it really comes down to controlling your own exit strategy. It takes a high quality of life country to with compassionate exit laws. He spent some time in each country. Met with docs, and care providers discovering the quality of life also includes quality of death. He plans to move to either country next year. I plan to visit him after he moves and maybe....
These comments all offer the tremendous variability in how/why, and how fast, a cancer progresses to the point of death...or not. You can only get several medical opinions from what are hopefully the "best" in their field locally...or even travel to well known facilities like Mayo Clinic, Johns Hopkins, Cleveland Clinic, UCLA, etc.
My personal experience is that my father lived to 99 years and 10 months WITH prostate cancer that was never even treated. He was too old for prostatectomy when he was finally diagnosed, but was told he had had it for at least 12-15 years, likely longer. But he suffered non-stop UTI's and hospitalizations. My maternal grandfather was diagnosed in the mid/late 1970's. He would go once per month and get a direct injection into the prostate (Lupron???). I was a young man and was never told many details. He never had the prostatectomy either, and he lived to age 96, dying from Alzheimer's, not prostate cancer. This is common enough that I have heard for decades that "if you have prostate cancer, you'll live long enough with it that you'll likely die of something else." But then, that is not always the case. I recall the father of a friend of mine. He started having lower lumbar back pain in his early '70's. He just thought he was getting old. This was in the days before there was a PSA test. He was dead within a month. The lower back pain was caused my massive lymph node invasion and metastasis throughout his pelvic area. He had ket his urination difficulties private. No one knew he had anything happening except "back pain" from being an old guy. It cost him his life. But that was the late 1970's. We've come a long WAY since then as informed patients and with incredible advancements in technology, treatment, surgery, etc.
Bottom line...you just don't know how "your" prostate cancer will compare to others. I highly recommend getting the Decipher Test though. It uses your biopsy (or surgical) prostate tissue to screen for 22 different prostate cancer-specific genes and mutations. You are given a "score" that relates to the severity of your cancer and the likelihood of progression or recurrence, plus a likely determination of likely longevity for you. Good luck.
You wrote "He started having lower lumbar back pain in his early '70's. He just thought he was getting old. This was in the days before there was a PSA test. He was dead within a month."
The problem is that there are a lot of different things we call "prostate cancer" — there's the slow-developing kind that your father died *with* at age 99 rather than *of*, there's the fast spreading kind that I got, which can escape the prostate in months rather than years or decades (my oncologist said about 5% of prostate cancers are like that), there's even-rarer small cell neuroendocrine prostate cancer (NEPC), which moves quickly into vital organs (that may be what your friend's father had). When you hear anyone still making a blanket statement in 2025 like "Prostate cancer is slow developing" turn your B.S. meter up to 11.
Fortunately, we have better tools these days, so instead of just talking about "prostate cancer", oncologists can consider the Gleason score, the PSA doubling time, genomic tests (e.g. Decipher), epigenetic tests (e.g. EpiSwitch), germline tests (e.g. Invitae), and advanced imaging (e.g. MRI, PSMA-PET) to make a much more-accurate diagnosis about whether your cancer is likely to be slow-developing or dangerously-aggressive. It's not just a matter of flipping a coin (heads we treat, tails we don't) any more.
p.s. I also discovered my cancer initially via back pain and then loss of mobility, but luckily, a) it wasn't NEPC, and b) there were much better treatments available in 2021 than there were even 5–10 years earlier, so I'm still going strong.
Easier for most women to give up a sex life than most men , before cancer once a week was enough for my wife since her appetite has diminished, but I was used to to 2-3 x a week. Not too many yrs ago now it’s over but my brain still feels like 50 , tough to accept
It really was one of the symptoms that brought him to the doctor too, but we had a lot of stress in our lives with my in-laws old and dying, so a little magic pill did the trick usually. But before the desire was there but function lacked a bit, now it's nothing.....I miss it....a lot!
I think of two questions: what is the diagnosis (some just warrant active surveillance) and what are one’s longevity/quality of life goals. I have the hardest time convincing my (much younger) oncologists that at age 74 I anticipate < 10 years remaining and want more quality of life rather than pounding the cancer for a complete cure. Gleason 7, N1M0.
at 74, ....N1 means one pelvic lymph node is positive presumably found on a PSMA PETCT scan
it is my understanding that a radiation spot treatment will return you to the 'status quo ante'
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Yes, great comment. It definitely sucks to be part of this "brotherhood", but for the most part, PC is really one of the "best" cancers to have to come down with!
Always good to keep in mind how much worse things COULD be, no?
But that is a very sad story, and thanks for sharing it, Phil.
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2 ReactionsI think of two questions: what is the diagnosis (some just warrant active surveillance) and what are one’s longevity/quality of life goals. I have the hardest time convincing my (much younger) oncologists that at age 74 I anticipate < 10 years remaining and want more quality of life rather than pounding the cancer for a complete cure. Gleason 7, N1M0.
-
Like -
Helpful -
Hug
2 ReactionsMy husband at first was ready to say NO and die, it was his MANHOOD!
Lots of arguments over weeks, I have holes in my walls because I threw at chair at night screaming in the dark and being angry!
Now the attitudes have changed on both our ends.
He's fighting it with everything! My husband is 55 and stage 4 metastatic PC.... I'm 47, we still have kids at home! I'm too young to be a widow! He's too young to die, plus in the last year his parents passed away and I lost my mom two weeks after his diagnosis, so I can't deal with another loss!!
At some point we had 3 sets of ashes in our closet and I begged my husband to fight because I don't want a 4th!
Now we're hardly 6 months into it, near the end of Chemo and it's been a battle for sure...
-
Like -
Helpful -
Hug
9 ReactionsI feel deeply for you and your husband especially since you are both so young. I hope he finds the strength to fight this horrible cancer if not for him but you and children. I’m a young 79 yr old who had prostate surgery a year ago , every day I wish that I had refused to do anything and not give up my quality of life and enjoy what time is left . I’ve had a loving relationship for 40 yrs with my younger wife but feel like a stranger now when we go to bed at night. Wishing you and family get the help you need to survive this .
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Helpful -
Hug
5 ReactionsSo far my husband is ok. Tired and achy and worn out but it comes and goes.
I told him earlier that I'd rather have a husband and no sex life than a dead husband and still no sex life!
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Helpful -
Hug
6 ReactionsEasier for most women to give up a sex life than most men , before cancer once a week was enough for my wife since her appetite has diminished, but I was used to to 2-3 x a week. Not too many yrs ago now it’s over but my brain still feels like 50 , tough to accept
-
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Helpful -
Hug
4 ReactionsThree years ago one of my aPC buddies decided to quit treatments. He was two years in at the time. Those years were horrible. He lost his wife, and health insurance, while the bills piled up. He decided to call it good. He stopped treatments. Focused on exercise, nutrition, and updated his playlist daily. Now his life includes long walks, long bike rides, long library visits, and long coffee visits with friends every day. He is defiantly living his best version right now. He's 74. He's checked out Netherlands, and Canada for their assisted dying laws. He discovered it really comes down to controlling your own exit strategy. It takes a high quality of life country to with compassionate exit laws. He spent some time in each country. Met with docs, and care providers discovering the quality of life also includes quality of death. He plans to move to either country next year. I plan to visit him after he moves and maybe....
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Like -
Helpful -
Hug
6 ReactionsYou wrote "He started having lower lumbar back pain in his early '70's. He just thought he was getting old. This was in the days before there was a PSA test. He was dead within a month."
The problem is that there are a lot of different things we call "prostate cancer" — there's the slow-developing kind that your father died *with* at age 99 rather than *of*, there's the fast spreading kind that I got, which can escape the prostate in months rather than years or decades (my oncologist said about 5% of prostate cancers are like that), there's even-rarer small cell neuroendocrine prostate cancer (NEPC), which moves quickly into vital organs (that may be what your friend's father had). When you hear anyone still making a blanket statement in 2025 like "Prostate cancer is slow developing" turn your B.S. meter up to 11.
Fortunately, we have better tools these days, so instead of just talking about "prostate cancer", oncologists can consider the Gleason score, the PSA doubling time, genomic tests (e.g. Decipher), epigenetic tests (e.g. EpiSwitch), germline tests (e.g. Invitae), and advanced imaging (e.g. MRI, PSMA-PET) to make a much more-accurate diagnosis about whether your cancer is likely to be slow-developing or dangerously-aggressive. It's not just a matter of flipping a coin (heads we treat, tails we don't) any more.
p.s. I also discovered my cancer initially via back pain and then loss of mobility, but luckily, a) it wasn't NEPC, and b) there were much better treatments available in 2021 than there were even 5–10 years earlier, so I'm still going strong.
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Hug
5 ReactionsIt really was one of the symptoms that brought him to the doctor too, but we had a lot of stress in our lives with my in-laws old and dying, so a little magic pill did the trick usually. But before the desire was there but function lacked a bit, now it's nothing.....I miss it....a lot!
at 74, ....N1 means one pelvic lymph node is positive presumably found on a PSMA PETCT scan
it is my understanding that a radiation spot treatment will return you to the 'status quo ante'
-
Like -
Helpful -
Hug
2 Reactions