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

My husband had "failed" AS because his urologist was NOT performing biopsy every 2 years and I just want to warn everybody not to shy from this procedure.

My husband's PSA was going up and down from about 3 to above 4 , than to 5.6 than back to 4. One MRI lesions shrunk in size in that period and small new one appeared on the left side this year. The first genetic test that was done on the first biopsy several years back was indicating LOW chance of aggressive cancer in 30 years, and so forth and so forth. So, in 7 years no more biopsies ware done and when it was finally performed again this year it showed 4+3 unfavorable with cribriform and IDC ! He had RP that showed that he actually had 4+5 😰. Thanks god we decided to have RP instead of RT since IDC and cribriform can be resilient to radiation therapy. His post op recovery was VERY fast, he is just 9 weeks post op and his incontinence is already almost non existent and ED is on nice recovery path and he just turned 70.

Bottom line - do not rely only on MRI and PSA levels alone ! I would strongly suggest that once you have 3+3 found you INSIST on having a biopsy every 2 years - your gleason can change as well as your Decipher as time passe and not always in a "slow" manner.

Wishing you all very successful AS and may you never come in our situation of regretting not having a biopsy 🍀🍀🍀. If we had known what was the correct and suggested protocol for AS (having biopsy every 2 years if there is 3+3 and visible lesion ), we would have chosen to proceed with a treatment at first 3+4 event.

I chose to treat my 3+4 gleason and 10.1 psa right away. There was no doctor that could accurately predict my growth even with a Decipher test, even with multiple opinions from centers of excellence doctors. For me, AS was not something I was comfortable with. If I was going through it again, I would have taken the PSE test with its higher level of accuracy before I took an MRI or a biopsy. I was treated with the Mridian radiation machine, which I would do again.

I started AS in 2021 when biopsy showed Gleason 3+4 in identified lesion per MRI with low risk Oncotype Score. But AS does not mean monitoring PSA without a biopsy; in fact a decision whether or not AS is a safe choice is dependent on the biopsy results along with genetic testing of the specimen (Decipher or Oncotype score).

This summer my PSA jumped from previous 8.5 ng/ml to 15.1 with unchanged MRI but Gleason 4+5 and bilateral disease on PSMA. Just finished high-dose SBRT and started 12-18 months ADT.

I do not regret the 4 years of AS, even with the power of the retrospectoscope looking back. I had 4 years without the side effects of RT or RP and the confidence in the scientific literature that reports the chance of long term disease control is unchanged by that choice.

I’ve been on A/S for about 4 years but for a much different reason… My Gleason was a 4+3 per my local center and rated a 3+4 by John Hopkins as I got a 2nd opinion…
In my case I have other medical conditions that are more serious than the intermediate risk prostate cancer… I am already taking chemotherapy pills daily for a blood cancer… Oncologist and urologist agree that treating prostate cancer be it surgery, radiation, and ADT could trigger the blood cancer to morph into a deadly leukemia… It’s a matter of risk analysis for me and prostate cancer, for now, comes in 4th place… That being said, I still monitor my PSA levels and will get another PSMA Pet scan in March/April 2026… My last scan was in 2023 and found no uptake outside of the prostate gland.. Good luck to all..

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
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.

Every urolgist/oncologist tells you after biopsy report that the actual grade and stage can be confirmed only after post surgical patholgy. So I dont understand how based on Biopsy results AS is offered/accepted?

@shalom7777777
Well, it does work for the vast majority of people that are on active surveillance. Sure, some of them eventually get prostate cancer, but the thing is when you’re on active surveillance you need to get tested every year.

@shalom7777777
Go to ancan.org And find out when they’re having their next active surveillance meeting. Attend the meeting and listen to people who have it and the person that’s running it ask them about the questions you have. Many people in active surveillance, go for many years and decades without having prostate cancer show up. Others do become cancerous, but they find out because they get tested every year.

I hear from these people all the time and many of them go decades without treatment being necessary.

@jeffmarc

It is better to say - they should be tested every year but they are not. In our case urologist relied on the first biopsy and the first genetic test 7 years ago that showed "low chance of progression" in 30 years. So, he only performed PSA and MRI every year and they we of NO help , obviously. Even if he had biopsy every year I doubt that 3+4 would be caught in time. If 4+3 turned out to be 4+5 in actuality, that 3+4 could be 4+4 in actuality !

All in all, if we knew what we know now, we would have done RP perhaps even at 3+3 !

I do not care what "experts" say - they were wrong for my husband's particular case every single time 🧐. I can only wonder what lesser experts in local community hospitals actually know or see ?