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

Posted by ozelli @ozelli, 1 day ago

I presume there are some but wonder if there are any lurkers who have been on AS for at least a few years?

I ask this because when I first had elevated PSA back in 2017 I went on a message board (not sure if it was this one, probably wasn’t) and felt a little pressured by people to get a biopsy asap (PSA was 5.75 at the time). Consequently while I still did some research, I avoided the message board scene for quite a while after that.

At that time, what I was really looking for was a dedicated message board for AS. Needed that rush of confirmation bias!
Still unsure if one exists…

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for carlwgordon @carlwgordon

@tuckerp
You only has a PSA of 1 what lead to suspecting cancer. 1 seems rather low.

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@carlwgordon yes. I have taken my share of questions concerning my decision. My father passed from PC. I caught mine only because I was having urgency to pee issues. I wanted it out. My father had done radiation and then had it come back 10 years later. My thought was lets beat this thing while I caught it early. I had no other initial testing except the biopsy. Medicare paid for it. Post op confirmed one lesion gleason 6 3+3. No other treatments. 6 years of < .01 PSA from sonora quest. I have an annoying drip. (incontinent) and trimix 5 units gives me about 2 hours. (ED) Ideal - not at all. Cancer free - maybe. My thought of the original question of AS from ozelli was doing nothing. I think handera response to AS is quite well thought out. I guess I could say most of us even after treatment are on AS.

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Profile picture for handera @handera

@ezupcic Yes, my PSA had risen to 7.8, which triggered my GP to schedule a visit with an urologist. My urologist indicated that the next step would to obtain a mpMRI....IMHO a mpMRI is an absolute MUST before submitting to any type of prostate biopsy.

In my case, the mpMRI found three lesions, one PIRADS 3, one PIRADS 4, one PIRADS 5. This triggered a targeted TRUS biopsy. I had a 21 core biopsy, which included the standard 12-core systematic portion.

It turned out the PIRADS 3 lesion was benign and the PIRAD 4 and PIRADS 5 lesions were 3+3, involving 5% of the specimen. The strange thing (at least in my mind) was that the systematic portion of the biopsy found 5 additional low volume cores (3 with 3+3 and 2 with 3+4)...not sure if these additional cores also sampled the mpMRI identified lesions or whether they were from lesions that the mpMRI missed or were just too small to see..

The deciding factor regarding treatment was the Decipher GRID report (attached), which recommended AS, based on their clinical-genomic model...my urologist agreed...I started my "aggressive AS protocol" immediately.

A 12 month mpMRI follow-up indicated that the original PIRADS 3 and PIRADS 4 lesions were no longer visible and the PIRADS 5 lesion had shrunk and it's T2/DWI signals were dropped from "moderate" to "mild" and my post-biopsy PSA levels have averaged ~25% lower than my prebiopsy level. I continue to apply my "aggressive AS" protocol.

All the best!

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@handera appreciate that. my most recent MRI was downgraded from a Pirads 3 to a Pirads 2 but I’ll continue with regular PSA tests and monitor prostate density, velocity etc. My urologist still believes I would benefit from a biopsy but I asked him what would be targeted he said “there is nothing to target” I guess implying maybe the MRI reading missed an undiagnosed cancer. But my prostate volume did decrease from 95 to 70ml which could also be connected to BPH. But I’m still hoping that diet and regular vigorous exercise will have some impact.

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Profile picture for Setters and Birds @jonathanack

@brianjarvis
Your experience mirrors mine except for the timeline. I was 62 when diagnosed - no health issues - very active (still). I was gleason 6 for 16 months with 4.1, 3.74, and 3.5. Three months later my annual physical blood work showed an increase in my psa to 4.04. I advised my urologists office and they sort of dismissed it and I asked to order a psa (I was 9 months out from a scheduled MRI). The PSA came back at 4.1, I asked for an MRI in January (6 months early) that came back pi-rads 4 (which the urologists office also thought was less urgent). I asked to move up my appointment and biopsy. When the actual urologist saw the results, he immediately scheduled a perineal biopsy (vs rectal) for better accuracy. The result showed cribriform in one tumor (new) and cribriform developed in an existing tumor (3+4). The progression occurred in about 16 months. I start radiation in the next 3 weeks (SBRT - 5 sessions at center of excellence).

Prostatectomy vs. SBRT offered no advantage per my urologist surgeon (Joseph Wagner - a star robotic surgeon with over 4k successful case and one of the pioneers in the application). He was very straight forward - your choice advised that if he were me he would be unable to determine a best option (he is known internationally as a Highly Regarded surgeon). Under his care I opted for SBRT with a MSK trained radiologist and 6 months ADT.

Prostatectomy is right for many patients. For me with localized cribriform and a curative option with radiation I was not willing to take the chance on lifelong/regular incontinence and ED. I expect a full recovery within 6 months and regular psa until I am toes up.

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@jonathanack That’s the personal call that the urologist/oncologist can’t make. I don’t know too many diseases/illnesses/injuries where the first choice is to amputate.
For me, the treatment decision was a relatively easy (but time-consuming) choice. One of the understandings I had with my doctors was that quality-of-life and successful treatment were equal priority for me. That set the basis for us working together and agreeing on a treatment plan. So, with success rates comparing surgery with radiation being statistically equivalent no matter what treatment chosen, it all came down to side-effects and quality-of-life.
So, I put together a spreadsheet and listed across all treatment options. Then I listed down all possible & possibilities (%) of side-effects from each type of treatment, and gave each one a score. The one with the lowest total “score” ranked highest. We then took that list, and narrowed it down based on the preventions available related to each individual type of treatment.
I then “scored” the quality of life priorities that came out of my personal introspection, and compared that final score result with the treatment options score result. The score that was closest matching was my 1st choice: Proton ranked 1st —> then IMRT —> then SBRT —> and last was surgery.

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Profile picture for Setters and Birds @jonathanack

@ezupcic
Yes. I was AS for 16 months and my psa went up a bit on my annual physical. I advised my urologist office and they were somewhat dismissive in a small rise. I asked for a psa early (by 6 months) and that indicated a rise. I then asked for my MRI early (by about 6 months) and that indicated pi-rads 4. I asked for an appointment with my urologist who immediately scheduled a perineal biopsy and the results showed progression and cribriform. I am gleason 7 now and starting SBRT (5 sessions with ADT for 6 months) Be your own advocate. Waiting for anything is a waste of time.

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@jonathanack, I agree.

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Profile picture for ezupcic @ezupcic

@handera appreciate that. my most recent MRI was downgraded from a Pirads 3 to a Pirads 2 but I’ll continue with regular PSA tests and monitor prostate density, velocity etc. My urologist still believes I would benefit from a biopsy but I asked him what would be targeted he said “there is nothing to target” I guess implying maybe the MRI reading missed an undiagnosed cancer. But my prostate volume did decrease from 95 to 70ml which could also be connected to BPH. But I’m still hoping that diet and regular vigorous exercise will have some impact.

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@ezupcic One of the “cutting edges” of PCa research is related to the importance and ultimately the aggressiveness of lesions that are “invisible” (or low grade) in a mpMRI.

The question to be studied is: If a mpMRI doesn’t find any visible or concerning lesions, should you continue to recommend a follow up biopsy?

It turns out that prostate cancer is the ONLY cancer where some practitioners will continue to recommend a biopsy, when nothing of concern is found in a mpMRI.

Here’s Dr. Mark Emberton’s take, which I found quite helpful.

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Profile picture for tuckerp @tuckerp

@carlwgordon yes. I have taken my share of questions concerning my decision. My father passed from PC. I caught mine only because I was having urgency to pee issues. I wanted it out. My father had done radiation and then had it come back 10 years later. My thought was lets beat this thing while I caught it early. I had no other initial testing except the biopsy. Medicare paid for it. Post op confirmed one lesion gleason 6 3+3. No other treatments. 6 years of < .01 PSA from sonora quest. I have an annoying drip. (incontinent) and trimix 5 units gives me about 2 hours. (ED) Ideal - not at all. Cancer free - maybe. My thought of the original question of AS from ozelli was doing nothing. I think handera response to AS is quite well thought out. I guess I could say most of us even after treatment are on AS.

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I was just wondering because I live Canada and was force to get new do Tomy
old one retired.
My new does not do digitals.He takes a PSA,which mine back at 2 in June
2025 and 2 in February 2024. instead of the digital he does a ultrasound
which show the results are attached.

I'm not sure your age but 74 years old. I just thought if you had a 1 it
seems not be suspicious. I guess you never know . Anyhow thanks your and
I'm your in good health.
P.S. ai also have some urgency and small leakage.

Take care

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Profile picture for brianjarvis @brianjarvis

@jonathanack That’s the personal call that the urologist/oncologist can’t make. I don’t know too many diseases/illnesses/injuries where the first choice is to amputate.
For me, the treatment decision was a relatively easy (but time-consuming) choice. One of the understandings I had with my doctors was that quality-of-life and successful treatment were equal priority for me. That set the basis for us working together and agreeing on a treatment plan. So, with success rates comparing surgery with radiation being statistically equivalent no matter what treatment chosen, it all came down to side-effects and quality-of-life.
So, I put together a spreadsheet and listed across all treatment options. Then I listed down all possible & possibilities (%) of side-effects from each type of treatment, and gave each one a score. The one with the lowest total “score” ranked highest. We then took that list, and narrowed it down based on the preventions available related to each individual type of treatment.
I then “scored” the quality of life priorities that came out of my personal introspection, and compared that final score result with the treatment options score result. The score that was closest matching was my 1st choice: Proton ranked 1st —> then IMRT —> then SBRT —> and last was surgery.

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@brianjarvis
Indeed. My decision was very much like yours minus the spreadsheet. My oncologist/surgeon literally said: I am not sure what I would do in your situation. Surgery or SBRT (both had ADT as part of the treatment re: cribriform) and were "equipoise". Pretty straight forward. Dana Farber concluded a test this spring for Proton therapy to treat cribriform and the results were not as strong as SBRT. The options I was presented are both curative and SBRT provides a quicker recovery and return life.

Quality of life and curative... I agree with your perspective. There is a difference between life and living.

REPLY
Profile picture for handera @handera

@ezupcic One of the “cutting edges” of PCa research is related to the importance and ultimately the aggressiveness of lesions that are “invisible” (or low grade) in a mpMRI.

The question to be studied is: If a mpMRI doesn’t find any visible or concerning lesions, should you continue to recommend a follow up biopsy?

It turns out that prostate cancer is the ONLY cancer where some practitioners will continue to recommend a biopsy, when nothing of concern is found in a mpMRI.

Here’s Dr. Mark Emberton’s take, which I found quite helpful.

Jump to this post

@handera interesting discussion.

At this moment for me I think if and when my psa goes above 10 and prostate density is above 0.15, and MRI Pirads goes back up to pirads 3-5 then it will probably be time to biopsy. But right now looking for cancer in my prostate when there is nothing specific to look at doesn’t seem necessary as long as I can live with some degree of uncertainty.

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Profile picture for ezupcic @ezupcic

@handera interesting discussion.

At this moment for me I think if and when my psa goes above 10 and prostate density is above 0.15, and MRI Pirads goes back up to pirads 3-5 then it will probably be time to biopsy. But right now looking for cancer in my prostate when there is nothing specific to look at doesn’t seem necessary as long as I can live with some degree of uncertainty.

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@ezupcic totally agree!

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Profile picture for carlwgordon @carlwgordon

I was just wondering because I live Canada and was force to get new do Tomy
old one retired.
My new does not do digitals.He takes a PSA,which mine back at 2 in June
2025 and 2 in February 2024. instead of the digital he does a ultrasound
which show the results are attached.

I'm not sure your age but 74 years old. I just thought if you had a 1 it
seems not be suspicious. I guess you never know . Anyhow thanks your and
I'm your in good health.
P.S. ai also have some urgency and small leakage.

Take care

Jump to this post

@carlwgordon I am 73 now. 67 when I found cancer. I went in for a routine exam due to urgency. Exam showed some elongation of the prostate. Dr said we should just do a biopsy to make sure if I was ok with it. I thought why not. I had not educated myself to even ask questions. Biopsy came back with cancer. I had no issues from the biopsy. Did he get lucky and find a spot. probably. Dr recommended AS. I refused and wanted it out. I had robotic laser assisted.

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