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Partner diagnosed with prostate cancer recently
Prostate Cancer | Last Active: May 1 4:49pm | Replies (32)Comment receiving replies
@jeffmarc
Hi Jeff,
Thank you..
We will definitely check ancan.org out. We could certainly use the emotional support and some additional tools to better understand what to expect.
My partner & I, spoke with Dr. Epstein yesterday.
What a kind man. And extremely knowledgeable. He looked at the biopsy slides for us and discussed the findings in detail. And believes that we are doing the right thing, RPR & Lymph nodes removed for testing.
He spent a good amount of time speaking with us.
He's also willing to test the slides after the procedure and happy to answer any questions going forward.
This really helped.
About the cribriform, he only could say that it's large & after the surgery, he will let us know how big it actually is, and run additional tests, if our surgeon is not willing to.
It showed up on a prostate specific MRI w/contrast-but he wasn't confident about the exact size.
How are you doing? Have you ever joined in on the group The Reluctant Brotherhood?
I looked them up and they have a range of support group meetings online.
Thank you again Jeff. I greatly appreciate your advice and help..
I hope today is a good day for you..
Melinda
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@myboo2u
It must’ve been great to talk to a doctor for a while after being treated so poorly by yours.
At least you’ve confirmed that your husband has large cribriform, Not sure if you asked Dr. Epstein, but I’m sure he could’ve told you that there’s no way it’s measured in centimeters. Large Cribriform has to be over .25 mm`
I attend the reluctant brotherhood advanced prostate cancer meetings on the second and third Thursday of every month. Peter Kafka, who runs the meetings is an old friend that I knew from Ancan.Org Years ago. He lives in Hawaii part of the year and in Minnesota part of the year. He has Lynch syndrome, which is a genetic problem and has had prostate cancer for 12 years. He’s even had BRCA2 on his somatic testing.
I’ve been attending the ancan.org Advanced prostate cancer meetings for about five years. They have at least 10 other meetings. Meetings for people over 60 for people in the military for people to just talk about issues both women and men, and they also have meetings for other cancers and even for one called visual snow for people who have continuously a visual snow interface in their eyes and they can’t see anything clearly this snow is always in front of their vision . Go to the website and you can pull up the calendar so you can see when things are scheduled. It’s under groups..
You do have to install go to meeting in order to attend the ancan.org Meetings. It’s free and is available On every device. You put answercancer for the name of the meeting to join.
The Advance Reluctant brotherhood group only has about a dozen people show up. There is frequently somebody new.
One of the guys that attends the reluctant brotherhood meetings has had large cribriform for over a year has a 3+4 Gleason score has talked with almost every expert in the field, Spent a lot of time talking with Epstein, Has decided to stay on active surveillance because his decipher score and his Polaris scores are very low for recurrence. Worried about the guy, but he’s an engineer with a PhD and is very picky about any information he gets. Another guy that usually comes to ancan.org and reluctant brotherhood meetings is from Alaska and uses estradiol patches instead of ADT.