Ignoring Prostate Cancer Entirely

Posted by survivor5280 @survivor5280, 3 days ago

I've read three posts in the past week or two talking about not pursuing treatment for asymptomatic prostate cancer or tests that show they might on the bubble.

Make the decision that best suits your needs in life. But, know the battle you are in for if you decide to roll the dice. No judgement for what you do, we all have our own path. Remember that people who love you will also be impacted by whatever decision you make.

This site summarizes it well: https://healthinkwell.com/what-happens-if-i-leave-prostate-cancer-untreated-stages-and-outcomes/

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

@handera

Here’s the link:
https://www.nejm.org/doi/full/10.1056/NEJMoa2214122
Spot on regarding the (1999-2009) ProtecT study group timeframe.

The Canary Pass study group timeframe (2008 - 2022), and their results mentioned earlier, are more representative of current day AS protocols.

I did find an interesting stat in the ProtecT study…45 patients (2.7%) died of PCa after 15 years; whereas 356 patients (21.7%) died of all causes after 15 years.

Not to minimize PCa, but we can tend (myself included) to focus on the trees rather than the forest.

I did a deep dive on that very subject, using a MSKCC nomograph regarding PCa male life expectancy…the results were stunning…but that’s a subject for a different post.

All the best,

Alan

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The risk is mixing up two types of prostate cancer — the slow-moving type, that tends to hit older people (who are likely to die of something else before the prostate cancer spreads), and the very aggressive type, that tends to hit younger people, and until recently, killed quickly.

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@northoftheborder

The risk is mixing up two types of prostate cancer — the slow-moving type, that tends to hit older people (who are likely to die of something else before the prostate cancer spreads), and the very aggressive type, that tends to hit younger people, and until recently, killed quickly.

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That’s why, at any age, knowing your PSA, mpMRI, biopsy, Decipher score and PSMA PET (if necessary) results, in that order, are essential for making management or treatment decisions.

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@handera

That’s why, at any age, knowing your PSA, mpMRI, biopsy, Decipher score and PSMA PET (if necessary) results, in that order, are essential for making management or treatment decisions.

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All true, but also it's important to be careful making blanket statements about the mortality rate of prostate cancer. You lose the aggressive cases in the statistical noise of the mild, elderly-onset ones.

It's fortunate that stage 4 is more manageable now, but that's a very recent development, and it's still a rough ride. We have quite a few people here in the forum who were diagnosed with stage 4 prostate cancer in their 50s and even 40s. While we're becoming more hopeful, for us, our prostate cancer still eclipses all other mortality dangers by a long way.

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@northoftheborder

All true, but also it's important to be careful making blanket statements about the mortality rate of prostate cancer. You lose the aggressive cases in the statistical noise of the mild, elderly-onset ones.

It's fortunate that stage 4 is more manageable now, but that's a very recent development, and it's still a rough ride. We have quite a few people here in the forum who were diagnosed with stage 4 prostate cancer in their 50s and even 40s. While we're becoming more hopeful, for us, our prostate cancer still eclipses all other mortality dangers by a long way.

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Thanks for that reminder, it is not my intent to minimize the seriousness of the life and death treatment decisions facing men with metastatic stage 4 prostate cancer.

This is why I usually refrain from commenting on posts asking about various treatments options, in this forum.

I also comment in other forums that breakout low risk PCa/active surveillance separately and I sometimes forget that this forum has a large portion of stage 4 folks.

The two disease types are so different, as to the best way to approach their management, that it would probably be better if they were called by different names.

Anyway, I’m sorry if my post made you feel I was minimizing the seriousness of stage 4 PCa, that was not my intent.

I have noticed there seems to be few, in this particular forum, who comment positively about AS.

Maybe the Mayo moderators of this forum could consider a separate proactive low risk PCa/AS support group; especially since 60% of men initially diagnosed with PCa are now opting for this management style.

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@handera

Thanks for that reminder, it is not my intent to minimize the seriousness of the life and death treatment decisions facing men with metastatic stage 4 prostate cancer.

This is why I usually refrain from commenting on posts asking about various treatments options, in this forum.

I also comment in other forums that breakout low risk PCa/active surveillance separately and I sometimes forget that this forum has a large portion of stage 4 folks.

The two disease types are so different, as to the best way to approach their management, that it would probably be better if they were called by different names.

Anyway, I’m sorry if my post made you feel I was minimizing the seriousness of stage 4 PCa, that was not my intent.

I have noticed there seems to be few, in this particular forum, who comment positively about AS.

Maybe the Mayo moderators of this forum could consider a separate proactive low risk PCa/AS support group; especially since 60% of men initially diagnosed with PCa are now opting for this management style.

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North and Handera, your banter is just so spot on about this disease…When I was first diagnosed, we were at a family gathering and my wife was in the kitchen, crying to her sister-in-law Fran about my bad biopsy report.
My wife later told me that Fran looked at her perplexed and said “What’s the big deal, It’s JUST prostate cancer!”
That’s the attitude most people seem to have when it comes to this disease - just a common ho-hum annoyance similar to the skin lesions that friendly dermatologists zap in a few short seconds. But the general public is ignorant of so many different types, stages and outcomes; it probably should be reclassified - something along the lines of Type 1 and Type 2?
Also, we can kick around the numbers from these 15 year studies until we’re old(er) men and what they mean but I’ll offer another wrinkle.
Two years ago a retrospective study looked directly at the need for ADT in salvage cases. They concluded that such “grievous harm” was done by ADT - fatal heart attack and stroke as well as exacerbation of diabetes - that it should only be considered in men with PSA values of 0.7 or more. People were dying - not from PCa but from the effects of ADT! So death certificates would read “myocardial infarction” or “cerebrovascular accident” - not “complications caused by metastatic prostate cancer”.
So Alan, when you read that the mortality rate in a certain cohort was this or that, please remember that many of these men - the 356 who died from “all causes” after 15 years - probably DID die from prostate cancer in a sense because it was the ADT used in their treatment that killed them before the disease did.
In fact the first RO I consulted cited this study when he told me that I would not be placed on ADT. He was very quick to accept this study.
I then got a second opinion from Sloan Kettering who basically said that whenever this disease comes back it really has to be considered more aggressive regardless of PSA cutoffs so ADT was recommended.
So in 15 years will they be looking back at that PSA study and conclude that perhaps ADT should have been used? Not used? Hard to say, but I chose ADT for 6 months simply to hedge my bet: if the study was correct, 6 months of ADT wouldn’t kill me…but if it was wrong, not having the ADT just might.
Phil

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@heavyphil

North and Handera, your banter is just so spot on about this disease…When I was first diagnosed, we were at a family gathering and my wife was in the kitchen, crying to her sister-in-law Fran about my bad biopsy report.
My wife later told me that Fran looked at her perplexed and said “What’s the big deal, It’s JUST prostate cancer!”
That’s the attitude most people seem to have when it comes to this disease - just a common ho-hum annoyance similar to the skin lesions that friendly dermatologists zap in a few short seconds. But the general public is ignorant of so many different types, stages and outcomes; it probably should be reclassified - something along the lines of Type 1 and Type 2?
Also, we can kick around the numbers from these 15 year studies until we’re old(er) men and what they mean but I’ll offer another wrinkle.
Two years ago a retrospective study looked directly at the need for ADT in salvage cases. They concluded that such “grievous harm” was done by ADT - fatal heart attack and stroke as well as exacerbation of diabetes - that it should only be considered in men with PSA values of 0.7 or more. People were dying - not from PCa but from the effects of ADT! So death certificates would read “myocardial infarction” or “cerebrovascular accident” - not “complications caused by metastatic prostate cancer”.
So Alan, when you read that the mortality rate in a certain cohort was this or that, please remember that many of these men - the 356 who died from “all causes” after 15 years - probably DID die from prostate cancer in a sense because it was the ADT used in their treatment that killed them before the disease did.
In fact the first RO I consulted cited this study when he told me that I would not be placed on ADT. He was very quick to accept this study.
I then got a second opinion from Sloan Kettering who basically said that whenever this disease comes back it really has to be considered more aggressive regardless of PSA cutoffs so ADT was recommended.
So in 15 years will they be looking back at that PSA study and conclude that perhaps ADT should have been used? Not used? Hard to say, but I chose ADT for 6 months simply to hedge my bet: if the study was correct, 6 months of ADT wouldn’t kill me…but if it was wrong, not having the ADT just might.
Phil

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Type I versus Type II PCa….great naming idea…the best I’ve heard yet…makes a lot of sense!

Don’t get me started about ADT…I’ll get thrown off this forum 😉

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@handera

Type I versus Type II PCa….great naming idea…the best I’ve heard yet…makes a lot of sense!

Don’t get me started about ADT…I’ll get thrown off this forum 😉

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Recommendations for ADT have become much more nuanced in the past few years, especially with advanced genetic screening, so anything you've read about overtreatment that is based on research conducted before the pandemic might not be relevant any more. They no longer automatically slap people on ADT just because of a high PSA reading or a dubious biopsy, and they support "ADT holidays" for people with low-grade, non-metastatic cancer to help the body recover from the side-effects.

In any case, it's keeping me alive with my stage-4 cancer, so for my case "Go, ADT!"

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@handera

Thanks for that reminder, it is not my intent to minimize the seriousness of the life and death treatment decisions facing men with metastatic stage 4 prostate cancer.

This is why I usually refrain from commenting on posts asking about various treatments options, in this forum.

I also comment in other forums that breakout low risk PCa/active surveillance separately and I sometimes forget that this forum has a large portion of stage 4 folks.

The two disease types are so different, as to the best way to approach their management, that it would probably be better if they were called by different names.

Anyway, I’m sorry if my post made you feel I was minimizing the seriousness of stage 4 PCa, that was not my intent.

I have noticed there seems to be few, in this particular forum, who comment positively about AS.

Maybe the Mayo moderators of this forum could consider a separate proactive low risk PCa/AS support group; especially since 60% of men initially diagnosed with PCa are now opting for this management style.

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I'm surprised to hear that you're not seeing positive comments about active surveillance. It's not the same as ignoring cancer, and is a mainstream recommendation these days for patients with low-grade cancer (Gleason 6 or below, confined to the prostate, with no other risk factors like the BRCA1/2 mutation) or elderly patients who likely have less than 10 years remaining.

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@northoftheborder

I'm surprised to hear that you're not seeing positive comments about active surveillance. It's not the same as ignoring cancer, and is a mainstream recommendation these days for patients with low-grade cancer (Gleason 6 or below, confined to the prostate, with no other risk factors like the BRCA1/2 mutation) or elderly patients who likely have less than 10 years remaining.

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….don’t forget to add select patients with low volume 3+4 Gleason to the latest group of PCa men who now are being recommended to start AS.
https://musicurology.com/programs/prostate/active-surveillance/
MUSIC (Michigan Urological Surgery Improvement Collaborative) has been one of the most successful U.S. programs for Active Surveillance. Over 90% of patients with low-risk prostate cancer in its program go on AS vs. 60% nationally. Likewise, MUSIC has been successful in offering AS to patients with favorable intermediate-risk prostate cancer at a rate of about 45% compared with 20% nationally.

Here’s a video of the latest AS developments, from February 2025

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@handera

Type I versus Type II PCa….great naming idea…the best I’ve heard yet…makes a lot of sense!

Don’t get me started about ADT…I’ll get thrown off this forum 😉

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