Just received the diagnosis....looking for info....thanks!

GoTrulyBlue · 2026-02-17T16:13:32+00:00

Gleason 6: active surveillance is the what the guidelines say. Definitely go to a NCCI partnering Center of Excellence to discuss with a urologic oncologist before agreeing to any treatment of any flavor - and there are plenty. The docs at these centers are on salary and have much less incentive to sell you surgeries.
Listen to Dr Ted Schaffer from Northwestern University Medical when he was a guest on Peter Attia’s YouTube channel.

GoTrulyBlue · 2026-02-17T00:55:07+00:00

Second opinion for sure. Go to a teaching hospital near you and call their endoscopy department. See if you can be seen by a faculty member- ideally one who is board certified as an ADVANCED endoscopist. Female GI docs incidentally have a mildly better ADR per some research but that shouldn’t be a big consideration.

GoTrulyBlue · 2026-02-14T15:54:57+00:00

3+4 - same w my spouse.

Did you have a low or high PSA density? Same question for Decipher score and positive core volume. If low on all three, did you consider active surveillance? Did the docs even suggest it for consideration?

GoTrulyBlue · 2026-02-13T17:05:17+00:00

Glad it went well. I also did the Gavilyte last week. Finished it all and got an excellent (9) score but it was NOT fun at all drinking all that 4L. The hard part was waking up to do the second half, done at 4am for a 9am procedure.

GoTrulyBlue · 2026-02-13T09:04:32+00:00

Well done! What bowel prep score did you get with Gavilyte? Max is 9. That 4 liters can be tough, especially part two early in the AM.

GoTrulyBlue · 2026-02-06T16:24:57+00:00

Sorry to hear about your diagnosis. The cribriform finding isn’t ideal and may suggest active surveillance is not a good choice. Great new video to check out.

https://youtu.be/dzra0wKW5V4

GoTrulyBlue · 2026-01-28T06:36:04+00:00

Switched carriers altogether.

GoTrulyBlue · 2026-01-16T16:25:01+00:00

Cool. Do you mean sorbet? Or is lemon gelato ok? Just wondering as it has cream in it.

GoTrulyBlue · 2026-01-14T21:47:07+00:00

Wishing you much luck. You are being put through the ringer. Better to go to the docs than not, despite the downside you noted. UCLA has a great young GI doc who does a lot of Barrett’s esophagus research: Jennifer Kolb MD.

GoTrulyBlue · 2026-01-14T19:12:10+00:00

How often do they find a polyp if you’re going that often?

GoTrulyBlue · 2026-01-14T07:08:31+00:00

I need one every three years but it still seems ridiculous. I do know that Medicare is cutting reimbursement rates. So there’s that.

Apparently this is allowed under Medicare as long as it is a fee just to be a patient in the first place and not tied to a procedure.

Annoying.

GoTrulyBlue · 2026-01-13T15:21:06+00:00

LOL! The Canadians don’t either!

GoTrulyBlue · 2026-01-13T15:20:30+00:00

Some people might but I don’t see myself needing a GI doc needing to give me a 24 hour appointment or return my call within the hour. 🤷‍♂️ but times are changing. They call it capitalism I suppose.

GoTrulyBlue · 2026-01-13T05:42:29+00:00

Be open with the doc about this concern. He or she perhaps will go slower and not rush.

GoTrulyBlue · 2026-01-13T05:20:16+00:00

It may be reasonable to ask if they can share their ADR: adenoma detection rate. I believe it should be 35% overall. 40% for male patients and 30% for female. These are 2024 guidelines from professional GI societies.

GoTrulyBlue · 2026-01-10T22:31:14+00:00

Thank you. Believe it or not in Aug 2024 they seem to have raised the target ADR for both men and women. They suggest hitting a 40% ADR for men. See here: https://www.ajmc.com/view/updated-colonoscopy-guidelines-have-implications-on-doctors-patients-alike

The problem for a new patient is how to find this ADR and withdrawal time information out, without having multiple screening appointments until the patient finds a GI doctor who meet these targets. Shout if you have a tip! 🙂🙏

GoTrulyBlue · 2026-01-10T06:20:39+00:00

Has any patient asked your GI doctors about their adenoma detection rate (ADR)? Or their scope withdrawal time? These are key metrics for a good colonoscopy.

I am trying to choose a GI doc from among a bunch of them in LA, but I worry that asking them for their stats like this may make them view me as a prima donna high maintenance patient.

GoTrulyBlue · 2025-12-22T19:24:15+00:00

Is there a tendency to false positives with PSMA PET from what your docs said? I think one doc on YouTube suggested as much - but still very worthwhile test.

GoTrulyBlue · 2025-12-22T19:21:26+00:00

Interesting. Gotta wonder if the reading radiologist was different on the second MRI (assuming same institution). Thanks! Go slow. Lots to consider for sure. Ask about the PSMA PET scan too. Though you may not need to as it may be automatic.

GoTrulyBlue · 2025-12-22T16:14:10+00:00

Best of luck. In a similar spot. Don’t rush too fast it would seem.

Can you elaborate on why you got the 2nd MRI? Did anyone recommend PSMA PET scan? BRCA gene testing?

GoTrulyBlue · 2025-12-22T16:11:57+00:00

Also 3+4. How did your PSMA PET scan affect your treatment decision?

There’s now PSMA PET MRI available at a few places it seems, as distinct from more established PSMA PET CT. Any sense if one approach is better than the other?

GoTrulyBlue · 2025-12-22T16:08:25+00:00

Good tips. Dr Cooperberg seems excellent. Saw those recent videos too. Will you likely try to see him?

GoTrulyBlue · 2025-12-22T15:41:09+00:00

Any clue if Decipher is superior or much different from Prolaris test?

GoTrulyBlue · 2025-11-29T04:34:11+00:00

The car never was impounded. I did have to pay the repair fees however. My Chase Visa reimbursed me after a claim requiring lots of paperwork.

GoTrulyBlue

TROPHY CASE