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52 years old BRCA 2 positive with a gleason 6 score
Prostate Cancer | Last Active: Mar 6 1:52pm | Replies (27)Comment receiving replies
I was given an MRI and biopsy as I opted to be part of this BRCA clinical study at Sunnybrook in Toronto after I tested positive for the gene. The head oncologist of this study said this is the truest way to check and monitor due to the mutation. I was immediately floored when the result came back what it did. I'm still dealing with the shock and anxiety. Now I'm trying to get as much info as possible as I was not prepared for this result as it caught me off guard. I'm still freshly coming off watching my parents pass one after each other. My mom passed of breast cancer at 66 in 2020 and my dad at 75 in 2022 of prostate cancer. Both were discovered at the end when it was to late. My dad was involved in a trial at Sunnybrook as his options were limited to him not responding to treatment. In the trial they discover he had BRCA 2 and I was informed of this last Oct 2 years after his passing when the trial was concluded. This led to my BRCA test which was unfortunately positive for the mutation. I was referral to this oncologist at Sunnybrook the same hospital and here we are its all happening so fast. I feel fine in general and been checking my prostate for a few years now annually and the physical exams and PSA tests were always normal. I asked that specific question of how long I could have been harboring this and how many samples they found to contain the disease and was told in 2 of the 16 both on the same side. I was told it's possible I have been living with this for years already. the thought of this in my body right now is very scary and due to everything I read about BRCA and the horror stories I debate whether active surveillance is for me. After reading further on the treatments nothing seems like great options so I'm doing the most I can at the moment with info gathering. Sorry for the longer explanation but I hope I explained this more clearly.
Replies to "I was given an MRI and biopsy as I opted to be part of this BRCA..."
Can totally understand the freak out and extreme anxiety at having been told that you have a genetic mutation that could predispose you to an early demise….
BUT you are one LUCKY SOB because not only do you know about it, but are part of a study to actively monitor it! Most don’t get that chance.
As has already been pointed out by @jeffmarc, Gleason 6 is not usually considered cancer and if monitoring shows no change, you just keep monitoring.
We all know the utter dread of possibly walking around with something so grave, yet not proactively “doing” something about it…but you are, by monitoring your PSA, having follow up biopsies and scans, etc….
Even if you insisted on surgery or radiation now, your respite from anxiety would be short lived; you would begin fretting and fixating on every single hundredth of a point on your follow up PSAs!!
You will hear most members on this forum agree that the most challenging part of this battle is the mental one. Master that part and the rest is easy.
Phil
You're being treated/cared for at Sunnybrook. The "father of active surveillance", Dr. Klotz practices and does research at Sunnybrook. You have an interesting situation. Gleason 6, if that is what you truly have, does not metastasize. It is as close to not having prostate cancer as one can get.........hence Active Surveillance. It can evolve into something more serious......hence keeping an eye on it is critically important. You might look into getting a consult with Dr. Klotz or someone of high caliber in his practice. Here is a very interesting presentation by Dr. Klotz which may be of value to you. Dr. Klotz's presentation starts at about 1:34:22 in the following video. https://www.youtube.com/watch?v=CLHYu1SqsUw&t=5662s
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When I was first diagnosed (at age 56, as I mentioned earlier), I tested negative for BRCA1 and BRCA2, but I had still ended up with very aggressive, fast-moving prostate cancer that had already metastasised to my spine before we found it.
Meanwhile. others here in the forum do have the BRCA2 mutation, and their cancer hasn't metastasised at all over years.
That's not to say that BRCA2 isn't an important risk factor, but it's not cut-and-dried, either. It doesn't mean you're doomed; it just means your medical team has to be more vigilant about surveillance, and perhaps act more quickly if/when they notice anything new.