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52 years old BRCA 2 positive with a gleason 6 score

Prostate Cancer | Last Active: 27 minutes ago | Replies (17)

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@jeffmarc

Gleason six is not considered cancer by many doctors. People are being over treated when they get a Gleason six and have anything but active surveillance. You can Take a PSE test to see if there is actually cancer in your body. This test is 93% accurate. Instead of getting a biopsy, if you take the test, it’ll say whether or not you need another biopsy. With the MRI, not finding anything, there may be other spots in your prostate that should be checked, the PSE test can let you know.

If you had cancer and it has not spread out of the prostate, then having surgery probably makes the most sense. That way, if it comes back (common) You can have salvage radiation.

I also have BRCA2. I was diagnosed at 62 and I’m still here at 77. I’ve had four reoccurrences, but with surgery, radiation and the drugs I have been able to stay undetectable at this point for 15 months. After Darolutamide fails I can Take a PARP Inhibitor and it should give me more time. One of the advanced prostate cancer Online meetings I attend had a participant who has BRCA2 and was still alive after 26 years. BRCA2 Isn’t a death sentence if you continue to get treatment. I know one man who has it but likes to take vacations from his medicine. He now lights up the PSMA pet scan like a Christmas tree. Once you need to be treated, you need to stay on the treatment or at least most people with BRCA2 Need to. I know that for me, if I don’t take the drugs or reduce the drugs that I take my PSA goes up very quickly.

I had a Gleason 4+3 after surgery, 3+4 was after a biopsy. Many people have higher Gleason scores after surgery. The cancer didn’t come back for 3 1/2 years after surgery, I had salvage radiation and it didn’t come back for 2 1/2 years. Since then, I’ve been on drugs and it’s been working pretty well. When you start off with a low Gleason you have a better chance of sticking around for decades.

My father died of prostate cancer at 88 but my mother gave me BRCA2, many cancers in her family. Strange thing is, both of my mother’s sisters had breast cancer and One of them died of it as did her daughter at 60. My mother had no cancer, died at 86 of multiple organ failures. None of my siblings or cousins have BRCA2 And neither of my children got it so I am the end of the line for this BRCA2 family chain. My brother got prostate cancer a couple years ago at 76, He doesn’t have BRCA2 but he does have a father that died of it.

To get more information, you could sign up with Ancan.org and attend their advanced prostate cancer meeting on Monday at 8PM eastern time. They have weekly two hour online meetings. The people there have 15 years experience handling prostate cancer treatment. There’s always at least three doctors at the meetings. You need some expert advice and they can give that to you. You probably would be more suitable for their low/intermediate sessions, but you could attend the advanced one to get help right away because of BRCA2. The same organization has a regular meeting for people who are under 60 with prostate cancer. There is an email group with a number of people that have BRCA, this is a group you could ask questions about your situation. They’re soon going to have an Online meeting for BRCA patients.

Don’t give up, You can still live a long life with proper treatment. New drugs have been coming out pretty regularly and they allow us to extend our lives.r

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Replies to "Gleason six is not considered cancer by many doctors. People are being over treated when they..."

Very kind of you to respond I need to look up some of the things you mentioned as it's all very new to me. When you were diagnosed did they tell you how long you most likely have been living with the disease? Currently my PSA levels are low I need to look up what's a PSE?