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.

Very good point.

I'm optimistic I'll win my fight to keep my stage 4 cancer at bay, but trust me, this isn't a fight you want if you can avoid it.

Discovering your prostate cancer before it metastasises is like winning the lottery; not treating it is like burning your winning ticket instead of cashing it in.

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Virtually everyone would agree that completely ignoring a asymptomatic PCa diagnosis is not wise; however, I doubt any man, under 80 years old, would take that approach.

The ProtecT (Prostate Testing for Cancer and Treatment) trial, conducted in the United Kingdom, is a landmark randomized controlled trial (the gold standard of medicine) that compared three management strategies for men with localized prostate cancer detected through PSA (prostate-specific antigen) screening:

1) active monitoring (a form of surveillance)

2) radical prostatectomy (surgery)

3) radiotherapy

This RCT concluded that, for men with PSA-detected localized prostate cancer, active monitoring, surgery, and radiotherapy resulted in similarly low prostate cancer-specific mortality and overall survival at 15 years.

In other words, for those diagnosed with localized PCa, it doesn’t matter which approach one decides upon (AS, RP or radiation); your 15 year overall survival rate will be the same.

However, radical treatments significantly reduced the risk of progression and metastasis, however, at the cost of immediate treatment-related side effects.

These findings emphasize the need to weigh the benefits of preventing disease advancement against the harms of treatment, tailored to individual patient circumstances and preferences.

The trial provides robust evidence supporting active monitoring as a safe initial strategy for many men, particularly those with low-risk disease, while underscoring the nuanced decision-making required when opting for immediate treatment.

So I agree that we shouldn’t judge what others decide to do regarding immediate treatment or active surveillance for those diagnosed with localized PCa; but we can rest assured that the best science has confirmed that any of these three decisions will NOT affect a man’s 15 year survival rate prospects.

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@handera

Virtually everyone would agree that completely ignoring a asymptomatic PCa diagnosis is not wise; however, I doubt any man, under 80 years old, would take that approach.

The ProtecT (Prostate Testing for Cancer and Treatment) trial, conducted in the United Kingdom, is a landmark randomized controlled trial (the gold standard of medicine) that compared three management strategies for men with localized prostate cancer detected through PSA (prostate-specific antigen) screening:

1) active monitoring (a form of surveillance)

2) radical prostatectomy (surgery)

3) radiotherapy

This RCT concluded that, for men with PSA-detected localized prostate cancer, active monitoring, surgery, and radiotherapy resulted in similarly low prostate cancer-specific mortality and overall survival at 15 years.

In other words, for those diagnosed with localized PCa, it doesn’t matter which approach one decides upon (AS, RP or radiation); your 15 year overall survival rate will be the same.

However, radical treatments significantly reduced the risk of progression and metastasis, however, at the cost of immediate treatment-related side effects.

These findings emphasize the need to weigh the benefits of preventing disease advancement against the harms of treatment, tailored to individual patient circumstances and preferences.

The trial provides robust evidence supporting active monitoring as a safe initial strategy for many men, particularly those with low-risk disease, while underscoring the nuanced decision-making required when opting for immediate treatment.

So I agree that we shouldn’t judge what others decide to do regarding immediate treatment or active surveillance for those diagnosed with localized PCa; but we can rest assured that the best science has confirmed that any of these three decisions will NOT affect a man’s 15 year survival rate prospects.

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Every time I read this study I really scratch my head. And I’ve read it at least 3X because I thought I was reading it incorrectly.
“PSA detected, localized” is sort of an ideal and I have to assume they’re speaking about low Gleason scores as well. When I think of my own situation (Gleason 4+3), surgery 6 years ago, now followed by radiation with ADT I cannot believe that this disease would NOT have killed me if I just watched it for 15 years, you know? But maybe I’ll die anyway, in spite of treatment😳?
I know I am a pessimist, but even an optimist would have been a little concerned with those stats. My cancer was considered localized as well and post op pathology showed negative margins, and no lymphatic spread.
But We’ve all seen how unpredictable the PSMA scan can be, showing NO metastatic areas in post- op salvage situations of PSA 10 or more; so how can any case be deemed “localized” when you can’t see if it’s outside the gland with any great degree of accuracy? Micrometastases simply don’t show.
Maybe if you are age 75 and over, I could see a 15 yr horizon being reasonable for the decision to treat or not - even with a higher PSA - but can a man in his 60’s really roll the dice on this British study?
I am always wary of an overburdened health care system - or an insurance companies recommendations- for cancer detection and treatment.
A few years back insurance companies said that they would only pay for PAP smears every other year instead of annually because it wasn’t ‘necessary’ to screen yearly…two years is plenty of time for uterine cancer to spread.
I could ramble for days about so many other tests and procedures but you get where I’m going…
It’s a great post, though, because it really shows the state of confusion about this disease even at the highest levels of the medical hierarchy.
Best,
Phil

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I have read the british study too and was leaning toward AS with my 3+4 gleason, 12psa at age 78. But my tumor was at the edge of the prostate and the study says although 15 year mortality is similar, 76% of the AS group needed treatment during that 15 year period.
It's a very tough call, playing odds, and very personal decision.
I will start proton radiation and hope for the best. My friend did this 2 years ago and when i ask him how the side effects are, he says 'what side effects'. I hope we are all so lucky.

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@heavyphil

Every time I read this study I really scratch my head. And I’ve read it at least 3X because I thought I was reading it incorrectly.
“PSA detected, localized” is sort of an ideal and I have to assume they’re speaking about low Gleason scores as well. When I think of my own situation (Gleason 4+3), surgery 6 years ago, now followed by radiation with ADT I cannot believe that this disease would NOT have killed me if I just watched it for 15 years, you know? But maybe I’ll die anyway, in spite of treatment😳?
I know I am a pessimist, but even an optimist would have been a little concerned with those stats. My cancer was considered localized as well and post op pathology showed negative margins, and no lymphatic spread.
But We’ve all seen how unpredictable the PSMA scan can be, showing NO metastatic areas in post- op salvage situations of PSA 10 or more; so how can any case be deemed “localized” when you can’t see if it’s outside the gland with any great degree of accuracy? Micrometastases simply don’t show.
Maybe if you are age 75 and over, I could see a 15 yr horizon being reasonable for the decision to treat or not - even with a higher PSA - but can a man in his 60’s really roll the dice on this British study?
I am always wary of an overburdened health care system - or an insurance companies recommendations- for cancer detection and treatment.
A few years back insurance companies said that they would only pay for PAP smears every other year instead of annually because it wasn’t ‘necessary’ to screen yearly…two years is plenty of time for uterine cancer to spread.
I could ramble for days about so many other tests and procedures but you get where I’m going…
It’s a great post, though, because it really shows the state of confusion about this disease even at the highest levels of the medical hierarchy.
Best,
Phil

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A few comments:

- IMHO “individual patient circumstances and preferences” ALWAYS trump even the best RCT’s.

- many folks equate “active surveillance” with “doing nothing”; when a true AS program is actually the opposite.

- the fundamental idea of AS is tied to the nature of low risk PCa….if/when the clinical/genomic evidence indicates unfavorable progression has occurred, usually defined by a confirmed biopsy of Gleason 4+3 (or higher) or a high risk Decipher score, THEN it is time to select a definitive treatment.

Of course, some men simply cannot bear the idea of any form of “cancer” being found in their body.

This is why some urologists and researchers advocate for a name change of Gleason 3+3 prostate cancer, suggesting terms like “IDLE” (Indolent Lesion of Epithelial Origin).

- the point of the ProtecT trial was to prove (as well as medical science is capable of proving) that there is no STATISTICALLY significant reason to choose immediate treat over AS for localized PCa.

In others words, one is NOT “rolling the dice” by choosing AS with low risk PCa.

….but low risk PCa folks are going to do what they want to do and and you’ll get no argument from me if it was simply a personal preference….just don’t indicate that “science” is the reason for their POV.

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@cianci

I have read the british study too and was leaning toward AS with my 3+4 gleason, 12psa at age 78. But my tumor was at the edge of the prostate and the study says although 15 year mortality is similar, 76% of the AS group needed treatment during that 15 year period.
It's a very tough call, playing odds, and very personal decision.
I will start proton radiation and hope for the best. My friend did this 2 years ago and when i ask him how the side effects are, he says 'what side effects'. I hope we are all so lucky.

Jump to this post

Just one person's perspective: when you're in a fight for your life, side-effects like bladder or rectal irritation (radiation cystitis or proctitis) don't seem like a big deal.

I'd prefer to have avoided the discomfort and embarrassment, of course, but they'd never have influenced my treatment decisions an iota.

But, to be fair, I was young and I knew my cancer was serious. The challenge is when the findings are inconclusive (e.g. Gleason score 6, PSA < 10) and/or you're very elderly.

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@handera

A few comments:

- IMHO “individual patient circumstances and preferences” ALWAYS trump even the best RCT’s.

- many folks equate “active surveillance” with “doing nothing”; when a true AS program is actually the opposite.

- the fundamental idea of AS is tied to the nature of low risk PCa….if/when the clinical/genomic evidence indicates unfavorable progression has occurred, usually defined by a confirmed biopsy of Gleason 4+3 (or higher) or a high risk Decipher score, THEN it is time to select a definitive treatment.

Of course, some men simply cannot bear the idea of any form of “cancer” being found in their body.

This is why some urologists and researchers advocate for a name change of Gleason 3+3 prostate cancer, suggesting terms like “IDLE” (Indolent Lesion of Epithelial Origin).

- the point of the ProtecT trial was to prove (as well as medical science is capable of proving) that there is no STATISTICALLY significant reason to choose immediate treat over AS for localized PCa.

In others words, one is NOT “rolling the dice” by choosing AS with low risk PCa.

….but low risk PCa folks are going to do what they want to do and and you’ll get no argument from me if it was simply a personal preference….just don’t indicate that “science” is the reason for their POV.

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"In others words, one is NOT “rolling the dice” by choosing AS with low risk PCa."

That was not at all what I was saying, and I think you have mistaken the intent of the post. AS is not ignoring anything, it's keeping an eye on it. Ignoring it, to me, says that you don't feel any symptoms but have a high enough risk cancer that you should do something but don't because you feel fine, thinking that PC should have symptoms to do anything about it.

And, I was very clear, I do not judge anyone who wants to take this path, I simply linked an article explaining what that path looks like.

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@handera

A few comments:

- IMHO “individual patient circumstances and preferences” ALWAYS trump even the best RCT’s.

- many folks equate “active surveillance” with “doing nothing”; when a true AS program is actually the opposite.

- the fundamental idea of AS is tied to the nature of low risk PCa….if/when the clinical/genomic evidence indicates unfavorable progression has occurred, usually defined by a confirmed biopsy of Gleason 4+3 (or higher) or a high risk Decipher score, THEN it is time to select a definitive treatment.

Of course, some men simply cannot bear the idea of any form of “cancer” being found in their body.

This is why some urologists and researchers advocate for a name change of Gleason 3+3 prostate cancer, suggesting terms like “IDLE” (Indolent Lesion of Epithelial Origin).

- the point of the ProtecT trial was to prove (as well as medical science is capable of proving) that there is no STATISTICALLY significant reason to choose immediate treat over AS for localized PCa.

In others words, one is NOT “rolling the dice” by choosing AS with low risk PCa.

….but low risk PCa folks are going to do what they want to do and and you’ll get no argument from me if it was simply a personal preference….just don’t indicate that “science” is the reason for their POV.

Jump to this post

All truly excellent points - especially about the notion that AS means doing nothing…quite the opposite!
And as Cianci points out - and which I’d stupidly forgotten - 76% of men under AS eventually DID get treatment, so only 24% of that AS cohort got away scott free! I’m no math whiz, but I think that changes the numbers a bit.
Mortality would have NEVER been the same in the AS group as it was in the surgery/radiation group since some of those men might have died without treatment; so again, we’re back to Gleason 6’s not amounting to much - not even cancer - and guys over 80 not needing treatment…Cheerio, mate!!

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We're all in agreement that "active surveillance" isn't the same as "doing nothing," and wasn't the subject of the OP. It's a very good approach to treating low-grade, low-risk, localised cancer in many cases.

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@heavyphil

All truly excellent points - especially about the notion that AS means doing nothing…quite the opposite!
And as Cianci points out - and which I’d stupidly forgotten - 76% of men under AS eventually DID get treatment, so only 24% of that AS cohort got away scott free! I’m no math whiz, but I think that changes the numbers a bit.
Mortality would have NEVER been the same in the AS group as it was in the surgery/radiation group since some of those men might have died without treatment; so again, we’re back to Gleason 6’s not amounting to much - not even cancer - and guys over 80 not needing treatment…Cheerio, mate!!

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Thanks Phil…I’d be interested in a reference to the data you cite.

I am aware of a JAMA study which was published in May 2024, entitled “ Active Surveillance for Prostate Cancer: 10-Year Outcomes From the Canary Prostate Active Surveillance Study” (study summary link below).

This study consisted of 2300 men who were followed on AS over a 10 year period, results follows:

• Discontinuation Rate: After 10 years, 49% of men remained on AS without treatment or progression, meaning 51% discontinued AS for various reasons.

• Primary Reasons for Discontinuation:

1. Disease Progression: Approximately 43% of men transitioned to treatment due to signs of progression, such as Gleason score upgrades (e.g., from 6 to 7 or higher), increased tumor volume on biopsy, or PSA doubling time indicating risk reclassification. This aligns with clinical triggers for intervention.

2. Patient Choice: Around 8% of men opted for treatment without evidence of progression, often driven by anxiety, preference for definitive action, or external influences (e.g., family pressure). This reflects the psychological burden of living with untreated cancer.

3. Other Factors: Less than 2% developed metastatic disease, and less than 1% died of prostate cancer, suggesting that some discontinuations were precautionary rather than strictly necessary. A small fraction also dropped out due to logistical issues (e.g., follow-up burden) or switched to watchful waiting as they aged.

• Validation of AS: Men who switched to treatment after years of AS had outcomes (e.g., metastasis rates, adverse pathology) comparable to those treated immediately, reinforcing that delays due to AS don’t worsen prognosis for most.

So this 2024 study found 43% of men on AS sought treatment after seeing some clinical evidence of progression, 8% sought treatment for other than clinical evidence reasons and 49% were still on AS after 10 years…..but less than 2% developed metastatic disease and less than 1% died of PCa.

So, statistically speaking, folks choosing AS are “flipping a coin”…heads you won’t need treatment after ten years and tails you will….but dying of PCa in 10 years is less than a 1/100 chance….now I like those odds😉

All the best,
Alan
https://www.fredhutch.org/en/news/releases/2024/05/active-surveillance-shown-to-be-an-effective-management-strategy.html

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