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

Posted by ozelli @ozelli, 2 days 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.

I didnt have the courage to stay on AS. Especially without the biopsy. PSA 1.0 Biopsy came back 1 out 12 with cancer and gleason 6 3+3. I still couldnt stay on AS. I have a friend PSA ranges from 7 to 9 and its been that way for about 5 years and he stays on AS. The AS group like yourself that just wants to monitor PSA is probably a small group. But I have seen many comments of those monitoring their PSA.

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I was in a similar situation with a PSA of around 4. I waited for a year doing several tests, usually in the 3.0-4.5 range and fluctuating. In the end a urologist did an ISOPSA test that came back high, biopsy showed Gleason 4+4=8 (downgraded to 3+4 at pathology). You could do an ISOPSA or PSE test before deciding on biopsy.

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I mention my active surveillance journey regularly,

Having first heard about PSA testing when I was 40y (in 1995), I started having PSA tests as part of my annual health checkups when I was 45y, and watched my PSA slowly rise each year (1.30, 1.64, 1.79, 1.87, 2.10, 2.60, 2.70, 3.40, 4.00 & 4.20).

So, it wasn’t a big shock to me in April 2012 (at 56y), that my urologist told me that my “blind” biopsy showed low-grade, localized prostate cancer: Gleason 6(3+3); an independent second opinion confirmed this.

I chose active surveillance (AS). I was on AS for about 9 years, which bought me time to learn about prostate cancer, get referrals, evaluate all available treatment modalities, and take advantage of medical and technological advances, so that if/when the time came to make a treatment decision, I’d be ready to pull the trigger.

The decision to go on AS was fairly easy because it was based on the data. By keeping AS truly “active” - and that involved monitoring much more than just PSA - I kept continuous track of my cancer status (just as I would do with any other disease, illness, or injury).

Eventually, my PSA reached 7.976; Gleason reached 7(3+4); a second opinion upgraded it to a 7(4+3).

By then I had already decided on proton radiation for my treatments. So, in April 2021, I started 28 sessions of proton radiation + 6 months of Eligard.

PSA dropped to < 0.008 while on Eligard; nadir was 0.13. These days PSA varies between 0.35-0.55; Most recent PSA was 0.473 ng/mL.

Today (more than 4-1/2 years post-treatment), life is pretty much back to normal (besides getting PSA tests every 6 months). My active surveillance decision was the right one.

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Did anybody on AS here do an MRI and how did those results impact the biopsy decision?

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Profile picture for brianjarvis @brianjarvis

I mention my active surveillance journey regularly,

Having first heard about PSA testing when I was 40y (in 1995), I started having PSA tests as part of my annual health checkups when I was 45y, and watched my PSA slowly rise each year (1.30, 1.64, 1.79, 1.87, 2.10, 2.60, 2.70, 3.40, 4.00 & 4.20).

So, it wasn’t a big shock to me in April 2012 (at 56y), that my urologist told me that my “blind” biopsy showed low-grade, localized prostate cancer: Gleason 6(3+3); an independent second opinion confirmed this.

I chose active surveillance (AS). I was on AS for about 9 years, which bought me time to learn about prostate cancer, get referrals, evaluate all available treatment modalities, and take advantage of medical and technological advances, so that if/when the time came to make a treatment decision, I’d be ready to pull the trigger.

The decision to go on AS was fairly easy because it was based on the data. By keeping AS truly “active” - and that involved monitoring much more than just PSA - I kept continuous track of my cancer status (just as I would do with any other disease, illness, or injury).

Eventually, my PSA reached 7.976; Gleason reached 7(3+4); a second opinion upgraded it to a 7(4+3).

By then I had already decided on proton radiation for my treatments. So, in April 2021, I started 28 sessions of proton radiation + 6 months of Eligard.

PSA dropped to < 0.008 while on Eligard; nadir was 0.13. These days PSA varies between 0.35-0.55; Most recent PSA was 0.473 ng/mL.

Today (more than 4-1/2 years post-treatment), life is pretty much back to normal (besides getting PSA tests every 6 months). My active surveillance decision was the right one.

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@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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Profile picture for ezupcic @ezupcic

Did anybody on AS here do an MRI and how did those results impact the biopsy decision?

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@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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Understand where you are coming from....I'm celebrating two years on AS this week!

Like you, at first, I felt pretty alone in my AS decision. However, over time, I've found many members in this support group to be supportive of AS, even though they may have been diagnosed with more aggressive PCa.

That said, someone first starting out on AS needs to be prepared for "naysayers"...I've definitely run into my share....but I have not found this small minority to exist in this forum.

The results I have experienced after implementing my "AS protocol" have been nothing short of phenomenal. Even my urologist indicates I'm a "poster boy" for what he calls "aggressive AS".

You may want to check out ASPI, if you looking for an organization whose primary focus is AS. Of all the groups out there, I have found this group to be the most "cutting edge", with the latest information about how to implement and manage AS for prostate cancer.

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Profile picture for ezupcic @ezupcic

Did anybody on AS here do an MRI and how did those results impact the biopsy decision?

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@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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If you want support and information from other people that are On active surveillance, you Should attend the ANCAN.org Active surveillance meeting Wednesday the 15th at 8pm eastern time. There are a bunch of people in there that are on active surveillance and a meeting lead who is very familiar with everything related to active surveillance and can give you advice.

Go to the website and find out more information. You do need to have GoTo meeting Installed on your device in order to Attend the meeting.

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Profile picture for tuckerp @tuckerp

I didnt have the courage to stay on AS. Especially without the biopsy. PSA 1.0 Biopsy came back 1 out 12 with cancer and gleason 6 3+3. I still couldnt stay on AS. I have a friend PSA ranges from 7 to 9 and its been that way for about 5 years and he stays on AS. The AS group like yourself that just wants to monitor PSA is probably a small group. But I have seen many comments of those monitoring their PSA.

Jump to this post

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

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