52 years old BRCA 2 positive with a gleason 6 score

54 here, five weeks post prostatectomy. Just take a breath, this will cause a lot of anxiety - it happened to me as well. Not a whole lot of us "kids" on here, but feel free to message me if you want to chat. In short, I came out unscathed for the most part, so there are success stories!

Gleason 6 is usually active surveillance territory, meaning no treatment needed as it's slow growing. You may consider a Decipher test to check if it's showing signs of being more aggressive or worse than G6.

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

If it's any comfort, you're in good hands. Sunnybrook in Toronto is one of the top-ranked cancer centres in the world, a couple of spots below Mayo Rochester (our kind hosts for this forum), but ahead of most other U.S. and global centres of excellence. You couldn't get measurably better care even if you were willing/able to travel outside Canada and pay hundreds of thousands of your own money.

Of course, that doesn't mean *every* oncologist at Sunnybrook (or anywhere else) is perfect, and no oncologist can predict the future, so it's always wise to do due diligence and get second opinions if you're unsure, but at least you don't have to worry that your cancer team isn't up on the latest treatments and best practices.

Good luck!

(p.s. Mayo is in Rochester MN, not Rochester NY, so sadly they're not right across the lake from Toronto. 🙂)

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?

Thank you kindly for your response. What were the levels for you to consider prostate removal? Also why that choice over radiation?

Thank you for taking the time to respond!

I was Gleason 3 + 4, and right on the bubble until my Decipher showed aggressive / high risk. I chose surgery because that's what 9 different docs recommended for me at this age, I can always get radiation later but radiation now can cause later life complications and even additional new cancer.

I found out four years ago I had BRCA2. There is no way of knowing how long you’re going to live. If someone gives you a number laugh at them, so many people have gone way past the dates they’ve been given. Most doctors will not give you an estimate.

The PSE test is an FDA approved test that tests your blood for the presence of cancer. Ask your doctor to do one. I’m attaching a picture of a table of tests, the top thing is the PSE test.

You didn’t mention what your PSA was. If it’s low 4 or below it would also be a reason to wait.

Not everyone with BRCA2 gets prostate cancer but your father having it is a significant factor since it greatly increases the chance you will get it.

Out of curiosity what were you told regarding RP that the chances of it coming back assuming they were able to concur that the disease they located was confined in your prostate and not surrounding tissues? Are you a BRCA carrier?
Thanks again!

sorry let me correct myself, when you got diagnosed did they say how long you've had it already? My PSA last checked was .5 so low but I need to repeat it in June after the prostate settles down from the biopsy. You do not consider a Gleason 6 cancer? I read so many mixed opinions. It's quite scary to say the least everything I read regarding brca and opinions to act prior to that not being an option.