Questions for new urologist - Active Surveillance

[Bubba101]

I am looking for a new Urologist and would like to have a few questions ready. I have Gleason 6, and am planning to pursue Active Surveillance.

What questions would you ask?

[Tall_Allen]

I think it's important to get on an active surveillance program. I think where men get into trouble is when they try to do it on their own. Usually large tertiary care hospitals have the best programs. Find out what their AS protocol is -PSAs, mpMRIs, biopsies, triggers for treatment, and how they will keep you in their program.

[GeoffNoLongerAS]

I was on AS for about 12 years or so. At the time I started it was a study at a center. mpMRI was not a mainstream treatment yet. I sought treatment in early 2020 due to rising PSA, change in grade after an mpMRI.

I second TA's advice. Know what the plan is, what tests and how often. Find a urologist in a practice at a center that deals with AS. I initially approached my urologist about AS. I remember his comment, paraphrasing, "sure we can watch it, then when you are ready we will operate". No clear plan, goals or limits. That was the last time I saw that urologist.

Other advice, keep up with the current state of AS. There are many online resources available such as this site, Zero Cancer, and Prostate Cancer Research Institute among others.

Feel comfortable that as the information about PCa and AS changes the center you are working keeps up with the information.

My situation required that I move to treatment. I was able to postpone treatment for about 12 years. In that time the understanding and treatments for PCa significantly improved.

[jimreilly]

I was on AS for several years at a large university medical center before finally having treatment (and since PSA has been undetectable for years); I also agree with Tall Allen's advice.

[MikeCaron]

hi Bubba, I agree with the advice here and I would add one more piece of information. There’s a peer-led online group for gay men with prostate cancer that meets every other Sunday at 10 AM PST/1PM EST. It’s through zero cancer. I started to attend before I even had my RP surgery. Many of the guys work in healthcare and it’s wonderful to have a huge support group and group of gay men who are very savvy about surveillance and treatments and side effects etc. The next meeting is Sunday, November 5. I’m going to paste below the invite for the next meeting. The zoom link is there, and you can also find it on the zero cancer website if you search on “Gay” and “prostate” and “virtual meetings”

“Todd Koser and David Horn are inviting you to a scheduled Zoom meeting.

Topic: LGBT Prostate Cancer Support Group

Time: Nov 5, 2023 01:00 PM Eastern Time (US and Canada)

Join Zoom Meeting

us06web.zoom.us/j/868972533...

Meeting ID: 868 9725 3359

Passcode: 934158

[EdinBmore]

Hey,

Gleason 6, AS for 7 yrs at Hopkins. In retrospect, I think uro waited too long before recommending that we "pull the trigger." He waited until PSA was 23 and Gleason 3+4. Do not know his reasons for waiting; I should have confronted him. Opted for radiation but because I waited so long, treatment was combo of IMRT, brachyboost, AND dreaded and devastating ADT. It could have been far less hurtful.

I agree with TA and I would emphasize a careful weighing of pros and cons of waiting and make sure you know what the "triggers" are for intervention. And, as TA often recommends, stay away from the knife and make sure your docs know your sexual orientation. Mine never "dealt" with it; perhaps they didn't think it relevant. Make sure you know what you're getting yourself into...if uncertain, ASK...no DEMAND answers you understand. It's your life and it IS going to be different.

EdinBaltimore