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

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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Very interesting! I was to be on active surveillance until my Decipher came in. It's interesting to see the statistics on how that may have gone.

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@survivor5280

Very interesting! I was to be on active surveillance until my Decipher came in. It's interesting to see the statistics on how that may have gone.

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Well, the particular details of one’s PCa diagnosis (both clinical and genomic) are what should drive the first decision, which is active surveillance vs active treatment.

Once one’s clinical/genomic biomarkers cross one’s personal “Rubicon” (which will be different for every man) then the particular treatment selected should be chosen, in consultation with medical professionals, that aligns with one’s view of the potential side effects of a particular treatment upon your remaining years and how one would cope if, heaven forbid, they become a reality.

Of course, selecting the best physician/team with a transparent track record of side effect minimization is a big plus….also requiring research.

All the best,

Alan

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@handera

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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Alan, great stats - I’ll take those odds as well! I guess it still comes down to early detection being the best treatment there is and AS is certainly all that in spades.
It further bolsters the advocacy for early screening and if more younger men were educated about it, they would embrace it rather than fear it.
Great post - as usual !

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@heavyphil

Alan, great stats - I’ll take those odds as well! I guess it still comes down to early detection being the best treatment there is and AS is certainly all that in spades.
It further bolsters the advocacy for early screening and if more younger men were educated about it, they would embrace it rather than fear it.
Great post - as usual !

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Just to add, I went back to the ProtecT UK study. Men in AS had nearly DOUBLE the rate of metastasis than men in either the surgery or radiation cohort (s). So now it’s a lifetime of ADT -and some required interventional treatment as well.
We all know how detrimental ADT can be, so again, we’re back to trading side effects from various treatment modalities even if we strip out the mortality factor….
Prostate Cancer simply sucks all around…

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@heavyphil

Just to add, I went back to the ProtecT UK study. Men in AS had nearly DOUBLE the rate of metastasis than men in either the surgery or radiation cohort (s). So now it’s a lifetime of ADT -and some required interventional treatment as well.
We all know how detrimental ADT can be, so again, we’re back to trading side effects from various treatment modalities even if we strip out the mortality factor….
Prostate Cancer simply sucks all around…

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Thanks — that's interesting!

Patients weren't randomly assigned into the RP, RT, or AS groups, so while it's suggestive that men who chose AS seem to have had a higher rate of metastasis, it could be due to some other cause (e.g. they were younger and would live longer for metastasis to happen, or they were elderly, and didn't want to deal with the side-effects of RT or RP in their remaining years, or they were just people who were more likely to avoid treatment later if the cancer progressed).

I honestly wouldn't know how to use this data to help me make a decision if I had a borderline diagnosis, except that both radiation and surgery have better outcomes and many fewer side effects than they did in 1998 when that study was launched, so the cost-benefit equation may have shifted in other ways.

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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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Well said! Those newly diagnosed and treated should be given a wecome basket of fruit, granola and a packet of "Depends." Greetings from the "Land of many ?'s and few answers" would be the card. With a background chorus of "What's a PSA test?" "I've never hheard of that" YES the amount if ignorance in the general public about PC and the importance of PSA testing is STILL apalling.
SW

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@northoftheborder

Thanks — that's interesting!

Patients weren't randomly assigned into the RP, RT, or AS groups, so while it's suggestive that men who chose AS seem to have had a higher rate of metastasis, it could be due to some other cause (e.g. they were younger and would live longer for metastasis to happen, or they were elderly, and didn't want to deal with the side-effects of RT or RP in their remaining years, or they were just people who were more likely to avoid treatment later if the cancer progressed).

I honestly wouldn't know how to use this data to help me make a decision if I had a borderline diagnosis, except that both radiation and surgery have better outcomes and many fewer side effects than they did in 1998 when that study was launched, so the cost-benefit equation may have shifted in other ways.

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Hey North , the entire study is on nejm.org…(sorry, don’t know how to post that link or article to the forum). But there is a small disclaimer under “limitations” and they say that the high number of metastasis seen in the AS group was probably due to the fact that there were more intermediate cases than they realized in that cohort, which was supposed to be all Gleason 6’s.
They also say that they could have done a much better job at screening if they had all the methods, tests and scans we use today. Fifteen years ago is practically the Dark Ages for this disease - and you are living proof that better tests, techniques and remedies are ALWAYS just around the corner.
Best, Phil

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@heavyphil

Just to add, I went back to the ProtecT UK study. Men in AS had nearly DOUBLE the rate of metastasis than men in either the surgery or radiation cohort (s). So now it’s a lifetime of ADT -and some required interventional treatment as well.
We all know how detrimental ADT can be, so again, we’re back to trading side effects from various treatment modalities even if we strip out the mortality factor….
Prostate Cancer simply sucks all around…

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Again you have squared the circle. ADT and other are so very bad as to SE"s for most. Dr, You would have to experience it to know how crappy you can feel on these treatments. Lift weights! Exercise! Take a walk! I'll get right to it after I crawl back from the toilet. Dr's must know how bad SE's can be but they also know there is nothing they can do about it.
SW

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@laccoameno5

Again you have squared the circle. ADT and other are so very bad as to SE"s for most. Dr, You would have to experience it to know how crappy you can feel on these treatments. Lift weights! Exercise! Take a walk! I'll get right to it after I crawl back from the toilet. Dr's must know how bad SE's can be but they also know there is nothing they can do about it.
SW

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Yes, ADT is tough, especially at first, but for me (and maybe other "lifers"?) it gets easier over time. Especially since I was able to abandon the injections and start on Orgovyx a year ago, it has only a small impact on my life now (3.5 years in). I mean, yes, I miss the hair on my chest and legs, I gain weight a bit more easily, and some types of physical intimacy are more challenging, but it's no longer like walking around with a millstone around my neck or anything like that.

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@heavyphil

Hey North , the entire study is on nejm.org…(sorry, don’t know how to post that link or article to the forum). But there is a small disclaimer under “limitations” and they say that the high number of metastasis seen in the AS group was probably due to the fact that there were more intermediate cases than they realized in that cohort, which was supposed to be all Gleason 6’s.
They also say that they could have done a much better job at screening if they had all the methods, tests and scans we use today. Fifteen years ago is practically the Dark Ages for this disease - and you are living proof that better tests, techniques and remedies are ALWAYS just around the corner.
Best, Phil

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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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