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52 years old BRCA 2 positive with a gleason 6 score
Hi everyone,
I am just shy of my 52 bday. I discovered I had the BRCA2 mutation via gene testing after my father passed of prostate cancer at 73 due to a trial result indicating he was a carrier. My mom died of prostate cancer at 65 a year prior. I just completed my MRI and apparently it was clean but the biopsy immediately following showed 2 of the samples (both of the same size contained the Gleason 6 disease. It has been a week since the result and to say my mind is traveling like a an out of control hamster on a wheel is an understatement. I was ensured not to worry as I have time to make a decision to which path I would like to follow. The expert oncologist is out of Sunnybrook in Toronto Canada. He has been forthright and says if it's him he would opt for active surveillance over treatment atm BUT with the BRCA 2 mutation it is a complete unknown. Everything I am reading seems bleak as to the right method I should approach. I am going to make an appointment to speak to a top surgeon here in Toronto regarding prostate removal as a treatment option but the more I read there are the cases the cancer returns and more aggressively even in a younger men than myself. I am doing the best I can to gather as much info as possible and came across this forum. At this time I would appreciate all the support and info I can get as my next appointment is not until June and I can't stop my mind from spinning for 24 hours never mind 3 months. Thanks in advance!
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I don't know on the carrier status yet, I go in for genetic testing in a couple weeks. They suspect I am because I've had two cancers, one quite rare.
Chance of it coming back post-prostatectomy is low, I think it peaks at about 12% in 15 years but I haven't had my first PSA test since the surgery so I don't know where I'll be - but I know I have a host of treatment options open as a result of choosing RARP over radiation.
thank you for sharing its appreciated. I wish you a healthy long life!!
No, they did not estimate how long I have had it. I’ve actually never heard of anybody getting that information…. But….. I had a biopsy about a year before the one that came up with Gleason 3+4, and there was nothing found. When they examined my prostate after surgery, it was 4+3, Something the biopsy never located. It could’ve been a year before If they had hit the right spots, it would’ve found something.
A few months ago, I saw a webinar where they really got into the reasons for not doing anything with someone who has a Gleason six. Unfortunately, it was never made available to view again. It was done through the Mayo Clinic on Dec 12,2024. I did Capture a number of screenshots during the webinar. I’ll look through them and maybe post Some of them in a future message.
Your PSA is very low and you have nothing showing in the MRI, Why did they do a biopsy? What made them suspicious that something was wrong besides the fact that you have BRCA2.
It is true that about 10% of prostate cancer patients do not produce PSA, So it stays low, even though the cancer is getting worse.
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.
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3 ReactionsWhen 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.
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3 ReactionsCan 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
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2 ReactionsIm 52 also, had surgery last year. Initially, i was told i was a Gleason 6, and my PSA was 6.8. I got a second opinion (at Mayo, Phoenix), and was "upgraded" to a Gleason 7 (3+4). In my case, i was told surgery was needed due to the cancer pushing against the gland, risking it penetrating the barrier of the prostate . If your PSA is .5, and you're a Gleason 6, rest easy. As mentioned above, some doctors dont even consider a Gleason 6 to be cancer. If i were in your shoes, i'd watch the PSA to see if it starts climbing.
I really appreciate every response I get it's extremely helpful. Are you a BRCA carrier as well? How has it been post surgery and what have the follow-ups been like? Is there any info you can share that you received post and pre surgery that would be helpful knowledge?