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Profile picture for rlpostrp @rlpostrp

My comment will be more..."direct". I agreed with my own physician: "Active Surveillance" is a waste of time. Your biopsy revealed that YOU HAVE PROSTATE CANCER, even if it is just, say, a Gleason 3+3 = 6. Why wait until it is worse? It's like knowing that you should change the oil in your car between 3,000 - 6,000 miles, but you "want to wait" and change it at 12,000 - 15,000 miles. Good luck. Now you likely have major problems with your engine because your filter is solid sludge and your engine is paying for it. Your cancer is only going to get worse during the two years...whether slowly or aggressively, and the problem is, YOU DON'T KNOW WHAT "YOUR" CANCER IS GOING TO DO. I offered before that the Gleason score and the biopsy barely scratch the surface of what is really going on with your cancer. Neither the Gleason score or the biopsy will tell you if you have Extra Prostatic Extension ("EPE") where the tumor has broken through ("Extended") outside the membranous capsule that contains the prostate. If you have EPE you will very likely have "surgical margins" after surgery...your urologist couldn't get "all" of the cancerous tissue. "Right now" your tumor may be confined within the capsule, but if you wait with Active Surveillance, your tumor may have broken through the capsule, and now you have EPE. You are now one of the unlucky 10-20% with surgical margins, who have cancerous tissue still inside you, slowly growing until your PSA eventually exceeds 0.2 ng/ml which now makes you a candidate for 40-days straight of radiation. The Gleason score and the biopsy don't tell you if your tumor has Cribriform gland tissue: sheets of prostatic tissue that have visual holes like Swiss cheese. This is a more ominous sign about the degree of pathology. Your Gleason score and biopsy don't tell you if there is bladder neck invasion, or lymph node invasion. I learned this: EVERY PROSTATE CANCER IS DIFFERENT. That is why you must insist on getting the Decipher Test as well, to screen for 22 prostate-specific/associated genes that will yield a score that tells if of your risk of recurrence and survival at 5, 10, and 15 years, and...if you have certain genes like BRCA that will determine the course of action that needs to be taken. It is just my personal opinion, but this whole "Active Surveillance" thing only exists because prostate cancer grows slowly...BUT IT IS STILL GROWING AND GETTING WORSE, AND IT WILL NOT JUST "GO AWAY". Why would you want to allow that to happen? I know a lot of men are lazy, and a lot of men have fear...fear of mortality and fear of surgery under anesthesia. But in my personal opinion, you are only fulfilling your worst nightmare by hiding behind two years of Active Surveillance. You might be pleasantly surprised that your cancer is still a Gleason 3 + 3 = 6 (I doubt it), or maybe a low-intermediate risk 3 + 4 = 7 at, or even after, the two years, but...it could also be a 4 + 4 = 8 or a 4 + 5 = 9 or even worse a 5 + 4 = 9. And now it is in your bladder neck and lymph nodes...maybe your bones. Sorry if this was harsh. I say this because if I had insisted on Active Surveillance after my doctor said "NO" to it, I'd be in deep, deep trouble in two years. My seemingly "not so bad" cancer with a Gleason of 3 + 4 = 7 with just 6-10% of cells rated as "4", shocked my doctor when the pathology report was sent. I did have EPE. I WAS one of the unlucky 10-20% with surgical margins, with cancerous tissue left in my body because my surgeon didn't get it all. I WAS one of the unlucky people with Cribriform gland tissue. And I was one of the unlucky ones who, because of EPE, saw the cancer spread to my left seminal vesicle although all cells were rated as "3" with no focal tumor or nodule in/on on the seminal vesicle. So I went from what my urologist thought would be a low-grade "barely" a T2 cancer, to a much more ominous pT3b because of all of that, most importantly the seminal vesicle invasion. That is the tipping point. Even though both seminal vesicles and vas deferens are removed with the prostate, a pT3b cancer nearly always recurs "within" five years. It's just the way a pT3b is. If I had gone just on my Gleason score, and waited with two years of Active Surveillance, I could have seen that cancer spread to my lymph nodes and bones. Sorry again for the harsh tone.

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Replies to "My comment will be more..."direct". I agreed with my own physician: "Active Surveillance" is a waste..."

@rlpostrp
There is quite a controversy about the over treatment of people that have a 3+3 Gleason. In most cases, they should not be treated, Because it isn’t likely they will have it turn into cancer in the future. You have a lot to say about it, but your point of view is not supported by the experts.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


Here is a video by Dr. Epstein discussing active surveillance and more

@rlpostrp

I agree 100 %

@rlpostrp

Thank you for sharing, it sounds like you and your physician made wise treatment decisions for your particular PCa diagnosis.

I also agreed with my urologist and the recommendation of my Decipher GRID report to pursue active surveillance.

As you indicated in your post that you learned “EVERY PROSTATE CANCER IS DIFFERENT”.

I suppose you are familiar with the 2025 NCCN prostate cancer guidelines.

The NCCN’s Early Stage PCa guidelines indicate that active surveillance is preferred for men with GG1 and a viable option for men with GG2.
https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf
Of course, Active Surveillance means one is being regularly monitored for signs of progression, while enjoying a time while all the potential negative side effects of treatment are a non-issue.

I believe the latest estimate is that ~60% of newly diagnosed PCa men are now selecting AS…a clear majority.

In my particular case, I’ve gone a step further and implemented an exercise protocol (ERASE) that has been demonstrated to slow PCa progression via a randomized clinical trial.

I fully understand that some men may have anxiety regarding the idea of harboring any form of “cancer” in their bodies….I get it….I suppose that just doesn’t bother me….and that’s not a putdown on those who may wrestle with this issue…it’s just that I have always looked at life’s challenges as a motivating factor to implement changes that show promise for a favorable outcome. I understand the risks and fully embrace them; especially based on all that I have learned about low risk prostate cancer.

That said, if at some point in the future my PCa progresses to GG3+, then I will select an active treatment action…but meanwhile all the side effects of my PCa “treatment” have been beneficial.

Thanks again for your post! I didn’t think it took on a harsh tone, as you have experienced a difficult set of circumstances and took appropriate treatment actions.

All the best!

@rlpostrp I cant disagree. Exactly what I did. Dr suggested AS on a gleason 6 3+3. I laughed at him and said thats not going to happen. Will insurance pay to take it out and he said sure. The one issue missing in your comment was the mental. My state of mind would have made me sick knowing it was in there growing. I would have gone to emergency for everything. Just knowing I was about to die. I rolled the dice on ED and incontinence. I got them both. but cancer free for 6 years, still healthy, No medications. every 6 month PSA with my blood work. Trimix fixes ED. I wear a clip or a bag for incontinence. I just cant wear shorts .