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I am 6months into this journey, with much less knowledge/experience than most on this forum.

Some thoughts from my last six months. I am not for or against any of the different treatment options.

1. PCRI and other leading youtube/internet voices push active surveillance hard and dogmaticly. I feel there should be more balance in their videos and disclaimers. There are straight-forward active surveillance and treatment situations (on both ends of the spectrum). There are unknowns and variables that need to be presented for the patients in the middle.

2. I have seen so many videos stating Gleason 3+3 will never metastasize and will never need treatment. I think these types of statements should to be “qualified” on many if these videos.

3. PCRI and others push hard and dogmatically, there is no longer a reason for a patient to choose a RP (or almost never). Statements are continually made about there is no difference in outcome of RP vs other treatments and many times vs no treatment. Very few discuss most data/studies are based on 5-15 year patient death information. Information about the chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc. I know this information is presented in many different formats and studies. In our 5-20 minute youtube video life, it is almost dismissive of this type of information. The messages are slanted: Don’t ever undergo an RP. Select another treatment. If cancer comes back, take two years of hormone and do another treatment and you will still be “alive” in 10 years. The issues a patient may have to live thru are too minimized.

4. No guidelines/recommendations can cover the variation in persons and conditions. “Click-bait” videos by medical members are not optimum.

OP, I wish you the best in understanding your situation and determing treatment/AS options.

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Replies to "I am 6months into this journey, with much less knowledge/experience than most on this forum. Some..."

@charlesprestridge For each of the points you bring up there are historical (sometimes decades-long) reasons why they’re being done. (I’ll cover them one-at-a-time.)

(1). The reason why active surveillance is being “pushed so hard and dogmatically” —> PSA testing has been around since the late 1980s. (I had my first PSA test in 2000.) In the early 2000s, so many men were opting for radical treatment for just a Gleason 6 (usually surgery) when it wasn’t medically necessary, that in 2012 the United States Preventive Services Task Force (USPSTF) recommended against routine prostate cancer screening thinking that stopping screening would stop overtreatment (assigning PSA screening a “D” recommendation: https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening-2012).

Prostate cancer has one of the lowest mortality rates of all cancers (< 12%; compare that to pancreatic cancer which is nearly 80%). The side/after-effects on quality-of-life from radical treatment are often worse than prostate cancer itself.

Many doctors (and insurance companies) followed that USPSTF recommendation, some did not.

That 2012 USPSTF administrative decision received much political pushback (when considering the “B” screening recommendation for breast cancer) , and in 2018 the USPSTF updated their prostate cancer screening recommendation to a “C” (https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening) that was accompanied by the “balance” that you see now —> that low-grade, localized disease (Gleason 6 and some Gleason 7s) can almost always be followed with active surveillance. You will rarely see active surveillance recommended for a 7(4+3), and never for a Gleason 8-10 (or for certain diagnoses with certain other risk factors).

(I was on active surveillance for over 8 years (2012-2021) and didn’t have treatment until my Gleason 6 progressed to a Gleason 7).
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@charlesprestridge (2) When properly phrased, what will be said is that a “true” Gleason 6(3+3) is not a cancer and that it doesn’t metastasize.


The next question (of course) is what is a “true” 3+3 and not a 3+3 with something more insidious lurking unseen?

There are two ways to do this:
> One is to simply cut it out (prostatectomy) and then see if the pathology warranted the radical treatment. (What other disease, illness, or injury do we do that with - amputate first, and then figure out later whether or not we should have?)

> The other is with active surveillance. That’s where keeping active surveillance truly “active” comes in. As with any other disease, the goal is to only seek active treatment when treatment becomes medically necessary (otherwise we’d be amputating every appendage or organ with every scratch, bump or bruise). Prostate cancer is no different.

For active surveillance, In addition to regular Total PSA testing, also track:
> % Free PSA
> PSA Doubling Time
> PSA Velocity
> MRI results
> PSA Density
> Biopsy results
> Biomarker (genomic) tests (there are at least a dozen of them)
> Genetic (germline) tests
> Bone/CT/PSMA scan results
> (in addition to all the other standard annual health-related tests that are done.)

For a “true” Gleason 6, you’ll be on active surveillance for a long time (or eventually succumb to something else). If not a “true” Gleason 6, by tracking all those markers appropriately, any change in prostate cancer status will be detected in real-time. That delay also buys time to come up with a plan of treatment should a concerning change ever occur. Then if/when necessary, actively treat.

(In my case, I used that time to thoroughly research and selected Proton radiation as my choice of treatment.)
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@charlesprestridge (3) You are interpreting today’s statements correctly - “….dogmatically, there is no longer a reason for a patient to choose a RP (or almost never)…..”. Just as we are no longer leeching people as a medical cure, prostatectomies - which have been done for over 150 years - may no longer be medical necessary. (Medicine, science, and technology do progress and provide modern options.). There may be some exceptions (large tumor load, as just one example).

But, when you talk to most guys who choose RP, the rationale is usually, “I just want it out and forget about it.” That’s it.

“Statements are continually made about there being no statistical difference in outcome of RP vs radiation vs active surveillance,…” because more and more data are showing that. Here is the most recent one that I’m aware of (from a paper in 2023): https://www.nejm.org/doi/full/10.1056/NEJMoa2214122

True, there won’t be just a single study that shows all that information you mentioned - clinical trials are typically designed to narrowly test one hypothesis and exclude confounders. However, studies are out there regarding the “…chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc.”

Here for example are a couple of papers on the benefits of exercise during hormone therapy:
> https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+20

> https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

None of these are dismissive nor do they minimize other issues. The studies are simply narrowly focused on the specific purpose of their study. As part of self-advocacy and shared decision-making, you’re going to have to look for whatever you’re trying to find out. (You’ll need time; and that’s what active surveillance provides.)

What you refer to as a “5-20 minute youtube video life,” should instead be spent listening to prostate cancer presentations by the major (and minor) urology centers and the conferences and seminars they present and host, as well as the papers they publish. The most recent information is out there.

Yes, this all can be very overwhelming and confusing if you’ve only recently started this journey. Instead of “Don’t ever undergo an RP,” it’s “have a medically necessary reason to undergo an RP.”

As the paper I cited earlier concludes, with recurrence rates between surgery and radiation being statistically equivalent, “… the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer.”) And active surveillance has come more and more into that discussion in recent years.
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@charlesprestridge (4) As for “No guidelines/recommendations can cover the variation in persons and conditions….” —> If you track all those markers….:
> Total PSA
> % Free PSA
> PSA Doubling Time
> PSA Velocity
> MRI results
> PSA Density
> Biopsy results
> Biomarker (genomic) tests (there are at least a dozen of them)
> Genetic (germline) tests
> Bone/CT/PSMA scan results
> And there are even more prostate cancer-related tests than those
> (in addition to all the other standard annual health-related tests that each of us should be having done.)

…..and use them along with the NCCN treatment guidelines, you’ll account for the variation in persons and conditions that today’s science and medicine has the ability to deal with. (Does that cover 100%? Probably not. But, what tests do?)

Agreed that “Click-bait” videos by medical members are not optimum.” But, literature and information produced by recognized urologic and cancer centers, organizations, and individuals should carry some weight.

Make use of every tool at your disposal to understand the full nature of your disease and to determine the appropriate treatment/AS options.
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@charlesprestridge
It was PCRI videos that convinced me to choose radiation, but it was a PCRI video about the Prostox tests that convinced me to get them. My Prostox test results put me in high risk for serious life long urinary complications from all forms of radiation treatment, so I'm getting surgery.