Confusing Messaging about Prostate Cancer

Posted by Climber @stevemaggart, Sep 11 9:11am

I won't go into great deal again, but I had an RARP and the pathology showed Gleason 9 Intraductal Carcinoma, locally advanced pT3a with cribriform present. My surgeon says that my cancer will come back and we have to be agressive with treatment. Yet, when I talk to people and read the blogs, it sounds to me that the perception is that PC is actually not all that life threatening, even in its advanced stages you can live for 15 years?
I can’t reconcile all of the messaging on treatments that we are going through and all the really nasty side effect and consequences if PC isn't that significant or serious, or at least fast moving, especially for a 70-80 year old person.
I point out to people that for a cancer that is not very serious, nearly 30,000 men die every year from it. But it is amazing how it is viewed by the public as a pretty insignificant and highly treatable disease. I would certainly like to put the cancer on ignore and not worry about it, the doctors don't seem to agree. Does anybody have similar feelings or any feedback?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@heavyphil

Right on, Brother! Even the penny pinching insurance companies with pay for a breast augmentation and nipple enhancement right at the time of mastectomy.
Do we even have a freakin lapel ribbon or a ‘Walk’ for prostate cancer? Oh I forgot - most men will die WITH prostate cancer before they die FROM it…..THAT slogan has gotta GO!!!

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100% Brother , here in Canada its a huge problem. I mentioned to the guys in the sauna about the mortality rates of prostate cancer and breast cancer and everybody is wondering why we only get two or 5% of breast cancer? More people die of prostate cancer than people die of breast cancer. Yet we are bombarded with breast cancer commercials, ovarian cancer commercials, and so on. I have never seen a prostate cancer commercial in Canada. This abuse of men and an appreciation for men has to stop immediately. I am talking to the politicians and they don't even have a clue that breast cancer gets 98% more funding than prostate cancer. James on Vancouver Island ! SPEAK UP AND SAVE YOURSELF AND YOUR BROTHERS ! 🙂

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@heavyphil

The difference is dying probably quickly and painlessly as opposed to a very slow agonizing death.
Not only do I personally know men who’ve died of this disease but two of my Drs have said to me “…you DON’T want to die from prostate cancer…”
I don’t think it was a scare tactic; we’ve all experienced side effects from treatment and some of them are not pleasant. I never want to experience the side effects of the disease itself - terrible bone pain, spinal deterioration from metastasis, liver impairment causing just about every metabolic problem you can imagine.
I know we always talk about quality of life as it pertains to ending treatment for a more comfortable passage to the inevitable. But I’m not so sure with this one. JMHO

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“ The difference is dying probably quickly and painlessly as opposed to a very slow agonizing death.”
Yes, it does seem to be about maintaining a sense of control over “how” we go. Each person seems to have their own take on that, given what they have heard, experienced or read, and who they trust as a reliable expert. That may be a parent, doctor or minister, or authoritative book to name a few. I have heard it said that “resistance to pain is suffering”, and that pain is part of life. So the question arises in my mind, “Is resistance to pain resistance to life itself?” And, “Does acceptance of pain provide us with a different perspective on life? These are questions I think we each must face as we progress on our journey.

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@sicernon3

“ The difference is dying probably quickly and painlessly as opposed to a very slow agonizing death.”
Yes, it does seem to be about maintaining a sense of control over “how” we go. Each person seems to have their own take on that, given what they have heard, experienced or read, and who they trust as a reliable expert. That may be a parent, doctor or minister, or authoritative book to name a few. I have heard it said that “resistance to pain is suffering”, and that pain is part of life. So the question arises in my mind, “Is resistance to pain resistance to life itself?” And, “Does acceptance of pain provide us with a different perspective on life? These are questions I think we each must face as we progress on our journey.

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Respectfully, I really don’t know what you are talking about. I feel you are overthinking a very simple concept.
If pain is your jam, I hope it brings the enlightenment you seek.

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@heavyphil

The difference is dying probably quickly and painlessly as opposed to a very slow agonizing death.
Not only do I personally know men who’ve died of this disease but two of my Drs have said to me “…you DON’T want to die from prostate cancer…”
I don’t think it was a scare tactic; we’ve all experienced side effects from treatment and some of them are not pleasant. I never want to experience the side effects of the disease itself - terrible bone pain, spinal deterioration from metastasis, liver impairment causing just about every metabolic problem you can imagine.
I know we always talk about quality of life as it pertains to ending treatment for a more comfortable passage to the inevitable. But I’m not so sure with this one. JMHO

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So, I've already experienced the spinal deterioration — by the time my PCa was detected, I had a huge lesion on my middle spine that they had to remove with > 10 hours of emergency surgery, then replace everything they gouged out from T1 to T5 using cement and metal bars.

I'm not saying it's a picnic, but I don't want others who already have bone metastases to panic and think they're doomed. It took a while, but after 3 years I can walk again, clear snow, garden, etc. I'm not pain free — low/moderate pain is a constant companion — but I've been off nerve-pain meds since spring 2023 and am doing fine with only the occasional Tylenol before bed when I think pain might keep me awake.

Treatment has improved dramatically in the last few years, and I credit that for the fact that I'm *not* experiencing all the horrors @heavyphil and others remember friends/family going through in the past.

It's not lucky having prostate cancer, but if you have to have it, it's very lucky having it in 2024 rather than 2014 (or even 2019 to some extent). But for < diety>'s sake, make sure you take that treatment, or you'll be no better off now than you eould have been then.

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@vancouverislandhiker

100% Brother , here in Canada its a huge problem. I mentioned to the guys in the sauna about the mortality rates of prostate cancer and breast cancer and everybody is wondering why we only get two or 5% of breast cancer? More people die of prostate cancer than people die of breast cancer. Yet we are bombarded with breast cancer commercials, ovarian cancer commercials, and so on. I have never seen a prostate cancer commercial in Canada. This abuse of men and an appreciation for men has to stop immediately. I am talking to the politicians and they don't even have a clue that breast cancer gets 98% more funding than prostate cancer. James on Vancouver Island ! SPEAK UP AND SAVE YOURSELF AND YOUR BROTHERS ! 🙂

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I'm sorry you've had a bad experience with cancer treatment in B.C., @vancouverislandhiker . I feel fortunate that I've had world-class prostate cancer care here in a big Ontario city, with the lastest meds and emerging practices, and have never felt I was being neglected because I'm male.

In fact, across Canada, cancer mortality for men has been falling at a much higher rate than cancer mortality for women, so there's a case to be made that we're actually underfunding research into women's health (as is often the case).

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North - I had a good experience, some men did not . You misread my intent . Some men did not have our experience and are being sent to another country for treatment . Is that good and peachy to you ? What I lobby for is parity for Prostate cancer research . Is that unfair when more men die of the decease or say Breast Cancer who gets vastly more money ? Both deserve to be address in relation to there frequency and mortality rates . Understand ?

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@heavyphil

Respectfully, I really don’t know what you are talking about. I feel you are overthinking a very simple concept.
If pain is your jam, I hope it brings the enlightenment you seek.

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Overthinking a simple concept is spot on.

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@heavyphil

Respectfully, I really don’t know what you are talking about. I feel you are overthinking a very simple concept.
If pain is your jam, I hope it brings the enlightenment you seek.

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“If pain is your jam, I hope it brings the enlightenment you seek.” My perspective on this is that pain is everyone’s “jam” and we spend an enormous amount of time and energy in life seeking to avoid it or deny it. As a primer on the subject, I suggest “The Denial of Death” by Ernest Becker.

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@vancouverislandhiker

Climber - you hit the nail on the head !!! Prostate cancer kills MUCH more men than people with breast cancer in North America ( NA ) each year ....BUT GETS ONLY 2-5% OF THE FUNDING BREAST CANCER GETS ! PC is very serious , as more people die from it than breast cancer . There is a HUGE GENDER BIAS for funding and social networks . It goes like this ..."men can deal with it , but breast cancer patients need research and care " . It is so unfair how little money PC gets in comparison to Breast Cancer ! YET , more men die of PC . We have to turn this around . I have started talks with my MLA and MP in Canada . They are even shocked at the low funding !

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This certainly doesn't cover all research funding, and it is in US, not Canada, but in 2022 the National Cancer Institute gave $580 million in grants for breast cancer research, and $280 million for prostate. That ratio has been steady for years:
https://www.cancer.gov/about-nci/budget/fact-book/data/research-funding
OTOH, There are more new breast cases /year (43,000 breast/34,000), yet more prostate deaths (30,000 prostate/27,000).
https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2021.html

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@northoftheborder

So, I've already experienced the spinal deterioration — by the time my PCa was detected, I had a huge lesion on my middle spine that they had to remove with > 10 hours of emergency surgery, then replace everything they gouged out from T1 to T5 using cement and metal bars.

I'm not saying it's a picnic, but I don't want others who already have bone metastases to panic and think they're doomed. It took a while, but after 3 years I can walk again, clear snow, garden, etc. I'm not pain free — low/moderate pain is a constant companion — but I've been off nerve-pain meds since spring 2023 and am doing fine with only the occasional Tylenol before bed when I think pain might keep me awake.

Treatment has improved dramatically in the last few years, and I credit that for the fact that I'm *not* experiencing all the horrors @heavyphil and others remember friends/family going through in the past.

It's not lucky having prostate cancer, but if you have to have it, it's very lucky having it in 2024 rather than 2014 (or even 2019 to some extent). But for < diety>'s sake, make sure you take that treatment, or you'll be no better off now than you eould have been then.

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You have been to hell and back with this disease and you are an inspiration to all of us.
The quality of your life - your life itself!- is a testament to medical progress and your own perseverance. Here’s hoping you continue to mend and enjoy your years on this earth.
Phil

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