Where are all the people on Active Surveillance (AS)?

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.

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.

@rlpostrp

I agree 100 %

@surftohealth88
It didn’t work for you but it does for a vast number of people. It’s upsetting how some doctors are just not competent to keep up with prostate cancer.

My brother was on Active surveillance for six years, At that point he had another biopsy and he was a 4+3, Radiation seemed to have worked well for him at 75, he is 80 now.

That ancan.org Active surveillance meeting has people that have been on it for a long time. Yes, results do vary.

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.

@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!

@jeffmarc

Well, it works until it does not, obviously.

That is what @rlpostrp was trying to say. It works for couple of years but the result is the same- in couple of years cancer becomes more advanced and treatment is necessary in the vast majority of cases. With that logic my husbands AS was successful since he was on AS for 7 years, actually longer since his first MRI was even before that, and PSA was checked for 10 years. His PSA was only 7.6 when his 4+3 was discovered, and that lesion shrunk in size BTW. After biopsy his PSA fell to 5.2 !!! ONLY after his gland was taken out it was obvious that is was taken in the last second (and maybe not).

I can talk only from my own experience and what I read here on this forum, our case is far form being exception here, unfortunately.

The younger the patient, the more troubling "waiting" is since 50 year old has 30 years ahead of him, unlike somebody who is 70.

It all has to be taken into account when making a decision.

@handera Thanks for the read and reply. In my unfortunately long-winded written offering, I was merely trying to say that it is naive to go with AS because you have a 3+3=6 or a 3+4=7 thinking you are low risk, when in fact...at that very moment - like me as a 3+4=7 - my cancer was far more aggressive than the 3+4=7 would have suggested. And, I would have never known it as it progressed during a 2-year AS, unless I had had the Radical Prostatectomy (RP) that showed I definitely needed to have that RP when I did..."immediately."

@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 .