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

@surftohealth88

“It (AS) 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.”

Not to be argumentative, but a recent (2024) Canary Prostate Active Surveillance Study (CanaryPASS), which collected data and tissue samples from more than 2,300 patients with early-stage prostate cancer found;

“10 years after diagnosis, that 49% of men using active surveillance…remained free of treatment or progression and < 2% developed metastatic disease and < 1% died of prostate cancer.

Further, patients who were treated after several years of active surveillance had the same rates of poor outcomes, such as adverse pathology or metastasis, as those treated immediately following a confirmatory biopsy, validating active surveillance as a safe initial management strategy for low-risk prostate cancers.”
https://www.fredhutch.org/en/news/releases/2024/05/active-surveillance-shown-to-be-an-effective-management-strategy.html
If AS results were not so promising the NCCN would not be indicating that AS is the PREFERRED treatment for those diagnosed with GG1 and a viable option for those with GG2.

I try to be careful NOT to say that other men with GG1 or GG2 should implement the ERASE exercise protocol to see a 25% reduction in their PSA, 12 month follow up mpMRI lesion reversal and VO2 Max increases of 25% after two years of implementing the ERASE protocol; even though that is what happened in my case. I know that my experience may not be normative…

I’m sure we can agree that every man diagnosed PCa needs to do as much research as they can tolerate and then make a treatment/AS decision, in consultation with their trusted physician, that is suitable for them.

A decision for Active Treatment or Active Surveillance will be different, based on a patient priorities, even in cases where the clinical/genomic data is nearly identical…and so it should be because of the nature of this disease.

@handera Thanks for the reply and question: I didn't get my Decipher Score until after my RP surgery. When I asked about it, my urologist said that he had tried to order it, but my "insurance company" denied payment coverage for it. I had both my wife's PPO plan AND I was on a Medicare Advantage Plan. I quickly called my Medicare Advantage Plan and they instantly said: "yes, you are fully covered for the test...there is no pre-authorization required. I was PISSED OFF at my urologist. I was completing a divorce so I was no longer on my wife's PPO plan (I was/am retired), so I couldn't check her plan, but I directly asked my urologist: "WHY didn't you check with Medicare?" He literally didn't answer, but instead answer with: "We know everything we need to know now that we have the surgical pathology report." I said "no we don't...I know nothing of my genetic make up and any genetic markers that make me predisposed for a worse or better outcome. I demanded that he order the Decipher test. My score was dead on in the middle at .50 "Intermediate Risk", but...my genetic profile was such that I have very low probability of death in 5, 10, or 15 years. The worse risk is like 7% at 15 years. I actually see him "tomorrow" and we're going to have a "chat." He is an incredibly nice guy and competent surgeon, but he is a bit dismissive and cavalier when considering his patient's opinions...or at least "my" opinions. He has never been fond or tolerant of my more educated and pointed questions (I was in health care for 40 years). And...
I regret to say that I have no idea what PSA Density is, nor high PSA velocity. That is not even in Dr. Walsh's book that I recall. Please explain what they are and what they mean. Thanks

@handera

Just wanted to say that my husband was athletic to begin with, was in sports his whole life and we are coming from Mediterranean region so our diet was based on tons of veggies and fruits and very little meat (beef never). He also was taking various supplements.

His PSA was going up and DOWN, 1 point or 2 and his lesion even shrunk - at the end it meant nothing. His cancer progressed regardless of all of that.

PC is unpredictable and of course, everybody will choose his path according to his preference and that is how it should be 😊👍.

However , I feel obligated to warn new members who are looking for answers that things can go south at any point and that they should be vigilant and insist on constant testing and regular biopsies by all means and also be aware that biopsy sees only 1% of the whole gland.

I wish somebody told us that - that is all.

After 4 years on active surveillance for Gleason 3+4, with low risk Oncotype score, my PSA jumped from 8.5 - 15.1 ng/ml between 12/2024 and 5/2025 in spite of unchanged MRI. Subsequent biopsy showed evolution to Gleason 4+5 with PSMA Pet Scan continued focal disease. AS does not mean "do nothing" and does not mean things won't progress, but statistically the outcome with delayed treatment is no different than the chance of recurrence or metastases even with earlier intervention. A decision to treat early does not guarantee a perfect outcome either (both due to treatment risks, side effects, and still possible recurrence). That being said, the perspective looking backward is also different than the perspective looking forward. Still, I have no regrets about choosing active surveillance; nothing wrong with believing in the science and proceeding accordingly.

@surftohealth88

Thanks for your reminder!

I agree that in many ways PCa can be unpredictable; this is why I intend to regularly monitor, according to AS standards.

As I write this post, I’ve just transferred all my medical records to a new physician, since we just moved to a new city, and I’m continuing my AS care under another urologist.

I am under no allusions that following my “aggressive AS protocol” guarantees that my PCa will not progress. I plan on closely monitoring.

If you don’t mind me asking did your husband have regular mpMRI’s to monitor changes in any observed lesions, during the 7 years he had no biopsies?

Also, did he have a confirmatory biopsy after the initial biopsy that led to his original PCa diagnosis?

You’ve indicated that after 7 years, he had a biopsy that indicated Gleason 4+3 (unfavorable) with cribriform and IDC and you recently decided upon RP, which indicated Gleason 4+5.

You’ve reported the good news that his post op recovery has been very fast and that after only 9 weeks his incontinence is already almost nonexistent and ED is on a nice recovery path.

I don’t want to presume, but even without follow up biopsies for 7 years, you and your husband were able to enjoy 7 years of AS AND….although the progression was much more than you had bargained for….it has been treated quite successfully (based on your report of the lack of the most common negative side effects)….and (I read in your recent post) that your husband also had a very good initial post op PSA level!

I say “Good for you”!

It seems you have managed PCa’s unpredictability quite well….I would venture a guess that many in this forum would be quite happy to have your husband’s PCa status.

Anyway, thanks again for your input, I will certainly pray that you will be able to continue to report successful results!

@rbtsch1951
How low was that oncotype score? Well, under 25 is low but 11-25 Is considered intermediate risk. A 3+4 should be treated unless it shows a very low percentage of four as well as a low percentage of cancer. Was AS really appropriate for you?

Research says

A low-risk score generally means that hormone therapy alone is likely sufficient after surgery, and chemotherapy may not provide enough benefit to outweigh its side effects.

That implies that something should be done right away about it no matter what the score, maybe Unless it is extremely low like 1 or 2.

I’m not saying the doctors are wrong. I would just want more information about what they found once they saw that score. How high was it.

@handera

Yes, my husband had yearly MRI, yearly PSA and yearly digital exam. PSA went up and down but trend was very slowly upward. His prostate was getting bigger with age so PSA slow rise did not cause much concern for his urologist. The last MRI showed lesion on the right getting SMALLER and than tiny one appeared on a left side and that triggered "suggestion" of doing "maybe" a second biopsy .

I would not wish to my worst enemy to go through a shock that we endured this year 😵‍💫😱😱 !!!! Having 4+3 unfavorable shortens recurrence free period and increases possibility of metastases, not to mention cribriform and IDC. Having gleason 9 puts one in HIGH risk for BCR in short period of time no matter the treatment one chooses ! I wonder if you ever checked those prediction nomograms 😞.

I have no idea why do you think we would not have 6 good years if he did have RP earlier ??? We would DEFINITELY had much better 6 years than we will be having now living in fear of BCR that is maybe going to happen in the next 6 mos ! 😢 (god forbid) .

Once your cancer becomes of higher gleason it is completely different story and different long term survival.

What does it matter that his recovery was fast and that his PSA is undetectable when now we are talking about months before possible BCR, while with 3+4 we would be thinking about a decade or even more !? I do not understand how you do not see how huge difference a gleason score alone can make and not to mention that NO MRI or PSMA can see or detect EPE , SV invasion etc, etc.

I wish you the best of luck and please 🙏 have biopsy every year or 2 and Decipher every single time ! It changes, it all can change without much change in PSA or size of lesion. Our urologist relied on PSA and MRI and the first genetic test that showed very low risk. There was no need for confirmation biopsy since at the time 3+3 matched genetic test results, lesion was small and only 2 cores had 3+3, all the rest completely clear. Even with his terrible results at the end - less than 10% of his prostate had any cancer , a biopsy had a single core with 4+3. Post RP pathology confirmed that - extremely small tumor burden, but gleason 9 because they also found comedonecrosis and nothing else meters now. He has high risk for BCR in short period of time 😭, I am sick to my stomach just thinking about it.

@surftohealth88

Thank you for your reply.

I knew cribriform and IDC are very concerning pathology features and would definitely rule out AS, if found after a biopsy….but comedonecrosis was a new one on me…I had to look it up…..the three way combination was described as a “highly aggressive tumor biology”….yikes….

Now I’m beginning to better understand everything you and your husband are going through.

I’m so sorry that this has come upon you; especially in the manner it happened (i.e. after 7 years thinking you were in a favorable risk situation)

It appears you are doing everything possible to help your husband through these deep waters, may the Lord strengthen both of you and bring success to you and your doctor’s efforts to stop further progression and spread.