1. < Prostate Cancer

52 years old BRCA 2 positive with a gleason 6 score

Posted by rnr @rnr, Mar 2 10:03am

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!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

rnr | @rnr | Mar 4 11:12am
In reply to @pdcar4756 "You're being treated/cared for at Sunnybrook. The "father of active surveillance", Dr. Klotz practices and does..." + (show)
@pdcar4756

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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Thanks so much for this info. I put in a request to see if I can speak to Dr. Klotz. In this video he clearly makes mention of BRCA and how he personally feels AS is not the preferred route in lieu of treatment for this mutation. I'm hoping for more direct clarity as I must assume he's in talks with the head Dr that's involved in this MRI and Biopsy trial.

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2 replies
northoftheborder | @northoftheborder | Mar 5 6:16am
In reply to @northoftheborder "If it's any comfort, you're in good hands. Sunnybrook in Toronto is one of the top-ranked..." + (show)
@northoftheborder

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. 🙂)

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I apologise. You are in excellent hands at Sunnybrook, as others have confirmed, but it's Princess Margaret that's in the list of top 10 global cancer centres.

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santo1245 | @santo1245 | Mar 5 6:01pm

I too carry BRACA 2 genes and my Pole genes are all positive. This puts me at high risk for prostate cancer , skin cancer, pancreatic and colon cancer.
Consequently I’ve been under surveillance by 4 specialist and I still got colon cancer!
Also, I was told by a geneticist that if I get prostate cancer it will spread like wildfire.Shit.
So,I like you am trying to decide on the best modality since I have 2 suspicious lesions on prostate.My PSA is still normal so it’s watch and wait.
My friend had proton therapy done 15 years ago and has had no return.
If I were you I would consider total prostatectomy or proton therapy.
Another friend dx with both prostate and bladder CA had both his bladder and prostate removed and the surgeon made a pouch from his intestine for urine. He has to urinate every 2hours or he wets. But he swears his new plumbing works better than his old plumbing! This was 20 years ago and Bob is now 99 years old! So keep the faith brother.

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clandeboye1 | @clandeboye1 | Mar 6 10:13am
In reply to @rnr "Thanks so much for this info. I put in a request to see if I can..." + (show)
@rnr

Thanks so much for this info. I put in a request to see if I can speak to Dr. Klotz. In this video he clearly makes mention of BRCA and how he personally feels AS is not the preferred route in lieu of treatment for this mutation. I'm hoping for more direct clarity as I must assume he's in talks with the head Dr that's involved in this MRI and Biopsy trial.

Jump to this post

@rnr 1st Sunnybrook is an excellent Cancer Research & Treatment Hospital and highly respected worldwide , and every bit as good as Princess Margaret . I know many of the Urologists and Oncologists at both hospitals . They partner and closely consult together to perform Biopsies and perform Focal Treatments at several Toronto area Clinics .
You are in panic mode as most newly diagnosed patients are -- it's a kick in the gut to hear you have cancer . As we all learned on this and other forums , plus educating ourselves via Dr. Patrick Walsh's book - " Guide to Surviving Prostate Cancer Ediition 5 " , ( the best money you will ever spend ) to be our own best advocate . " DON'T MAKE A KNEE JERK TREATMENT DECISION YOU MAY REGRET THE REST OF YOUR LIFE " . You are not going to die tomorrow , you probably had this cancer for 10 or more years . Patients have been on active surveillance for years - many never requiring treatment . Prostate cancer is SLOW GROWING and as the experts say . If you are going to get cancer -- Get prostate cancer , it is the most curable .
NEXT : Remember . Your Urologist will want to perform surgery . It's in his job description .
A Radiation Oncologist will want to radiate . It's in his job description . There are numerous other successful Focal Therapy options out there. I have 4 Cores Gleason 6 and 2 Cores Gleason 3 + 4 = 7 . and am on Active Surveillance . i.e. Regular PSSA Tests , Bone & CT Scan to check for metastasis , plus MRI and depending on the findings another Transperineal MRI Fusion Biopsy .
Have you had a Bone & CT Scan ?
Have you requested a 2nd or 3rd opinion of your Biopsy Pathology results to confirm your Gleason scores ?
How many cores were taken during your Biopsy ?
At this juncture continue with AS as recommended by your Oncololist - regular , every 3 months PSA etc . You will settle down as you educate yourself and commit to being " YOUR OWN BEST HEALTH ADVOCATE " and don't be shy about getting " GETTING PROFESSIONAL 2ND OPINIONS " It is highly recommended .
You may wish to follow Dr. Mark Scholz on his U-TUBE Videos Re: Various prostate cancer issues .
Good luck .
p.s. You may wish to contact me privately and we can communicate further .

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1 reply
clandeboye1 | @clandeboye1 | Mar 6 10:56am
In reply to @rnr "Thanks so much for this info. I put in a request to see if I can..." + (show)
@rnr

Thanks so much for this info. I put in a request to see if I can speak to Dr. Klotz. In this video he clearly makes mention of BRCA and how he personally feels AS is not the preferred route in lieu of treatment for this mutation. I'm hoping for more direct clarity as I must assume he's in talks with the head Dr that's involved in this MRI and Biopsy trial.

Jump to this post

@rnr Another site HealthUnlocked -- similar to this site .

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rnr | @rnr | Mar 6 10:58am
In reply to @clandeboye1 "@rnr 1st Sunnybrook is an excellent Cancer Research & Treatment Hospital and highly respected worldwide ,..." + (show)
@clandeboye1

@rnr 1st Sunnybrook is an excellent Cancer Research & Treatment Hospital and highly respected worldwide , and every bit as good as Princess Margaret . I know many of the Urologists and Oncologists at both hospitals . They partner and closely consult together to perform Biopsies and perform Focal Treatments at several Toronto area Clinics .
You are in panic mode as most newly diagnosed patients are -- it's a kick in the gut to hear you have cancer . As we all learned on this and other forums , plus educating ourselves via Dr. Patrick Walsh's book - " Guide to Surviving Prostate Cancer Ediition 5 " , ( the best money you will ever spend ) to be our own best advocate . " DON'T MAKE A KNEE JERK TREATMENT DECISION YOU MAY REGRET THE REST OF YOUR LIFE " . You are not going to die tomorrow , you probably had this cancer for 10 or more years . Patients have been on active surveillance for years - many never requiring treatment . Prostate cancer is SLOW GROWING and as the experts say . If you are going to get cancer -- Get prostate cancer , it is the most curable .
NEXT : Remember . Your Urologist will want to perform surgery . It's in his job description .
A Radiation Oncologist will want to radiate . It's in his job description . There are numerous other successful Focal Therapy options out there. I have 4 Cores Gleason 6 and 2 Cores Gleason 3 + 4 = 7 . and am on Active Surveillance . i.e. Regular PSSA Tests , Bone & CT Scan to check for metastasis , plus MRI and depending on the findings another Transperineal MRI Fusion Biopsy .
Have you had a Bone & CT Scan ?
Have you requested a 2nd or 3rd opinion of your Biopsy Pathology results to confirm your Gleason scores ?
How many cores were taken during your Biopsy ?
At this juncture continue with AS as recommended by your Oncololist - regular , every 3 months PSA etc . You will settle down as you educate yourself and commit to being " YOUR OWN BEST HEALTH ADVOCATE " and don't be shy about getting " GETTING PROFESSIONAL 2ND OPINIONS " It is highly recommended .
You may wish to follow Dr. Mark Scholz on his U-TUBE Videos Re: Various prostate cancer issues .
Good luck .
p.s. You may wish to contact me privately and we can communicate further .

Jump to this post

how can we communicate further?

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clandeboye1 | @clandeboye1 | Mar 6 1:52pm

@rnr You can post a personal response on this site others cannot see . Then I can give you my email address .

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