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Post surgical PSA thresholds with BRCA2
Prostate Cancer | Last Active: Jan 28 3:03pm | Replies (8)Comment receiving replies
@colleenyoung, I actually had my follow up appointment today. I go to Mayo Phoenix. I have to say I'm disappointed in my provider. I just feel that they don't seem to be concerned about my high risk (pT3b, Gleason 9) pathology or my status with BRCA2. They want to apply the same standards to my situation (no action until two consecutive PSAs of 0.2. I let the provider know that I wasn't waiting until then. I asked for a referral to a medical oncologist with some genetic knowledge and was told they really didn't have anyone. I'm already searching for another opinion but will likely have to travel out of state, unfortunately.
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@jaflag
I also have BRCA2. Found out about it about six years ago. First diagnosed 16 years ago. Had surgery and when it came back 3 1/2 years later, had salvage radiation. Had two more reoccurrences And been on Zytiga. Became castrate resistant while on Lupron. Have been on Nubeqa For almost 3 years and I’ve had 26 months undetectable.
When what I’m on right now fails I will take a PARP inhibitor. Those drugs are really hard on the body and causing an email in a lot of people so they are the last resort for some people.
UCSF has a BRCA education workshop on February 17th. Here is a link if you want to attend. Just sign up with this link.
https://ucsf.co1.qualtrics.com/jfe/form/SV_9M3KLAIroZrEVGS
Ancan.Org Has a meeting every quarter for people with genetic problems like BRCA. You can go to that site and sign up. They have a lot of meetings for people that have prostate cancer all different levels.
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@jaflag Totally get your concern and understand your need to be proactive with BRCA2.
However, I posted an article today (NEW BLOOD TEST) and in it you can find links to other Duke studies; one of them had a short blurb about BRCA2 and how it relates to PCa.
New to me was the fact that not all men with BRCA2 go on to have the most aggressive cancers - many do not.
So perhaps that new blood test at Duke which tests for future castrate resistance/poor prognosis is the one you need to see how aggressive you need to be with your treatment. Hope that helps,
Phil