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.

@sicernon3

“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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OK, I can wrap my head around that universal truth: to live is to suffer. Whether it be your own or sharing the pain of loved ones, pain WILL touch you at some point.
Where I disagree is this: the avoidance of pain is instinctual - a survival mechanism the organism uses to avoid possible death. You are not denying its existence but rather postponing its inevitability.
If you just throw up your hands and say “Prostate cancer or heart attack - what’s the difference?” You are inviting a scenario in which YOU are CAUSING your own pain and possibly your inevitable death a lot sooner than necessary.
Do we kill ourselves just because we know that one day we will die?
I don’t see treatment of any disease an inordinate use of time and energy.

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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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L4 in my spine was treated with SBRT but MRI tests showed it had multilevel degenerative disc disease. L4 is where the nerves that control your legs reside. I was told that if it deteriorated anymore, they could use cement to support it

I know other guys with prostate cancer have had discs deteriorate to the point where they’ve disintegrated and they’ve literally become shorter. Fortunately, it did not affect their mobility.

I am 6’ 4” and was not looking forward to that as an option. It’s good to hear they were able to do so much rebuilding with your spine, gives me some comfort that they will probably be able to do something for me if mine gets worse.

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@trusam1

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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Breast cancer afflicts all genders, just not equally.

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Thats a very good point . Breast Cancer affects men and women - The WHOLE population , yet has a smaller mortality rate per 100K . All th amore need to FUND-UP Prostate cancer in my opinion . Prostate cancer has a uncertain past when looking at funding compared to Breast , Ovarian and other high frequency cancers . Its about time Prostate cancer gets its funding and recognition and yes ...even TV commercials warning men of the dangers and dispelling the myth it is a old mans disease and people in there 40's do get it . Testing in Canada is hit and miss . In many provinces - doctors are being told not to do any lab work around prostate cancer or even PSA baseline testing unless the patient is showing severe and unusual urological symptoms. This is not what medicine is all about. Saving $15 Canadian on a PSA test could kill a person. Saliva tests, blood tests, for abnormalities in the prostate should be done early and age and more frequent in anybody over about 40 years old. Once you have symptoms as a prostate cancer patient, your window of treatment is considerably smaller. Doctors know this, researchers know this, yet the edict has gone out in many provinces to suspend and withdraw PSA testing unless there is severe and unusual neurological issues. Unbelievable. Who makes up these rules? Men are already swimming upstream with respect to funding and profile in our North American community.

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@vancouverislandhiker

Thats a very good point . Breast Cancer affects men and women - The WHOLE population , yet has a smaller mortality rate per 100K . All th amore need to FUND-UP Prostate cancer in my opinion . Prostate cancer has a uncertain past when looking at funding compared to Breast , Ovarian and other high frequency cancers . Its about time Prostate cancer gets its funding and recognition and yes ...even TV commercials warning men of the dangers and dispelling the myth it is a old mans disease and people in there 40's do get it . Testing in Canada is hit and miss . In many provinces - doctors are being told not to do any lab work around prostate cancer or even PSA baseline testing unless the patient is showing severe and unusual urological symptoms. This is not what medicine is all about. Saving $15 Canadian on a PSA test could kill a person. Saliva tests, blood tests, for abnormalities in the prostate should be done early and age and more frequent in anybody over about 40 years old. Once you have symptoms as a prostate cancer patient, your window of treatment is considerably smaller. Doctors know this, researchers know this, yet the edict has gone out in many provinces to suspend and withdraw PSA testing unless there is severe and unusual neurological issues. Unbelievable. Who makes up these rules? Men are already swimming upstream with respect to funding and profile in our North American community.

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The decline in PSA testing had nothing to do with saving money; it was a misguided reaction to doctors overtreating people based on mildly elevated PSA results.

Instead of improving treatment practices, a lot of influential people and orgs (including the researcher who initially identified PSA) lobbied simply to stop routine PSA screening, which is why we've seen a big increase in people who already have advanced prostate cancer at first diagnosis. 🤦‍♂️

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@northoftheborder

The decline in PSA testing had nothing to do with saving money; it was a misguided reaction to doctors overtreating people based on mildly elevated PSA results.

Instead of improving treatment practices, a lot of influential people and orgs (including the researcher who initially identified PSA) lobbied simply to stop routine PSA screening, which is why we've seen a big increase in people who already have advanced prostate cancer at first diagnosis. 🤦‍♂️

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Good point! There was a savings for the MSP plan here in BC , by NOT testing men . Quite a significant amount of. But then two things happened . They increased the numbers in administration over the last 5 years AND the initial PSA test ( if they were lucky enough to get one) was historically much more severe cancer than with regular testing. So, absolutely you are right, and the frequency of advanced prostate cancer was much much higher and treat ability much much lower according to the researchers that I spoke to at the MSP planning office. I I am in talks with my member of legislature and MP trying to get some more funding for the guys at least two parity of some of the more frequent cancers. I'm trying to get some more corporate sponsorship as well and some preventative TV advertising coordination. God Bless and thanks so much for caring.

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@vancouverislandhiker

Thats a very good point . Breast Cancer affects men and women - The WHOLE population , yet has a smaller mortality rate per 100K . All th amore need to FUND-UP Prostate cancer in my opinion . Prostate cancer has a uncertain past when looking at funding compared to Breast , Ovarian and other high frequency cancers . Its about time Prostate cancer gets its funding and recognition and yes ...even TV commercials warning men of the dangers and dispelling the myth it is a old mans disease and people in there 40's do get it . Testing in Canada is hit and miss . In many provinces - doctors are being told not to do any lab work around prostate cancer or even PSA baseline testing unless the patient is showing severe and unusual urological symptoms. This is not what medicine is all about. Saving $15 Canadian on a PSA test could kill a person. Saliva tests, blood tests, for abnormalities in the prostate should be done early and age and more frequent in anybody over about 40 years old. Once you have symptoms as a prostate cancer patient, your window of treatment is considerably smaller. Doctors know this, researchers know this, yet the edict has gone out in many provinces to suspend and withdraw PSA testing unless there is severe and unusual neurological issues. Unbelievable. Who makes up these rules? Men are already swimming upstream with respect to funding and profile in our North American community.

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VancouverIslandHiker -- you said "Breast Cancer affects men and women - The WHOLE population , yet has a smaller mortality rate per 100K". That's technically true, but very misleading because when they give the mortality rates for breast cancer, because it affects BOTH men and woman, it's given in deaths per 100K PEOPLE. However, men are less than 2% of the cases, which means it's effectively halving the true death rate since it's 98%+ a womens disease. Meanwhile, prostate cancer deaths solely affect men, so it's given in deaths per 100K of MEN. That mean a direct comparison of breast cancer and prostate death rates is very misleading. Just to be clear, breast cancer kills more women than prostate cancer kills men in the USA and in Canada each year. It also does so worldwide.
https://www.wcrf.org/cancer-trends/breast-cancer-statistics/
https://www.wcrf.org/cancer-trends/prostate-cancer-statistics/

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@retireditguy

VancouverIslandHiker -- you said "Breast Cancer affects men and women - The WHOLE population , yet has a smaller mortality rate per 100K". That's technically true, but very misleading because when they give the mortality rates for breast cancer, because it affects BOTH men and woman, it's given in deaths per 100K PEOPLE. However, men are less than 2% of the cases, which means it's effectively halving the true death rate since it's 98%+ a womens disease. Meanwhile, prostate cancer deaths solely affect men, so it's given in deaths per 100K of MEN. That mean a direct comparison of breast cancer and prostate death rates is very misleading. Just to be clear, breast cancer kills more women than prostate cancer kills men in the USA and in Canada each year. It also does so worldwide.
https://www.wcrf.org/cancer-trends/breast-cancer-statistics/
https://www.wcrf.org/cancer-trends/prostate-cancer-statistics/

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Retired guy - I get your point for sure . Statistically I could proved both ways depending on my data sets and sub-sets, and other. The data sets if you notice have issues too ! For example , my father died of Prostate Cancer . But on my Grandfathers cause of death it was called"lung infection" . Reading the Dr's notes on my Grandfather - it was indeed "prostate cancer " that was the real Cause of death . Historic data was really hit and miss up to about 20-28 years ago in Canada . Proximate vs remote cause of death was a issue . I think what we can Agree on is that Prostate cancer needs more funding and greater awareness. I am trying to get local government on board and also Provincial Government. I also have a few Corps interested to" invest in the future of Prostate Cancer awareness and control " . They are both glandular in nature and who knows , there could be a crossover therapy or two that will help both - that would be terrific ! God Bless . Have a good day , whenever you are . James on Vancouver Island.

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I think the key point is that we all need to pull together.

Prostate cancer, breast cancer, ovarian cancer, testicular cancer, bladder cancer, pancreatic cancer, brain cancer, lymphoma, lung cancer, leukemia, and all the others deserve research, and very often research into one leads to advances for the others: in fact, something like mRNA research could be a game changer for many/most of them in a few years.

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@northoftheborder

The decline in PSA testing had nothing to do with saving money; it was a misguided reaction to doctors overtreating people based on mildly elevated PSA results.

Instead of improving treatment practices, a lot of influential people and orgs (including the researcher who initially identified PSA) lobbied simply to stop routine PSA screening, which is why we've seen a big increase in people who already have advanced prostate cancer at first diagnosis. 🤦‍♂️

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@northoftheborder
Yes! Great post!
A couple of years ago my PCP at Mayo told me that PSA checks were now being prioritized again after many years of downplaying the need to test by medical society,

He said statistics started showing sharp increases in late-stage prostate cancers. It did not take long to see that not doing aggressive PSA testing was not catching prostate cancer in preliminary stages with a much higher rate of curing.

So, your post is right on!
My PSA was normal 3.75. However, I have a great PCP and did not like PSA rising each time he tested it and so referral to urologist, MRI, biopsies, and diagnosis of early-stage prostate cancer.

Every doctor I saw said that I had a great PCP and his insistence on testing you and then referral to urologist allow you diagnosis in early stages with very high cure rate.

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