Life as a Male With a BRCA Mutation

By on November 10th, 2016 Categories: Symptoms & Diagnosis

We have heard so much about BRCA since the coming-out party of Angelina Jolie in 2012.

Prior to Angelina putting the BRCA mutation on the general public’s map, the only people who understood anything about it were the patients, their families, and some medical professionals. I say “some” because my journey as a BRCA2-positive male has proven to me that many doctors had no idea that MEN could carry, pass, or be diagnosed with breast or other mutation-related cancers.


Whether you are a survivor (like me, of both BRCA-related breast and prostate cancer) or a previvor (a person who carries a BRCA genetic mutation but hasn’t yet been diagnosed with cancer), being BRCA-positive is a life-altering, eye-opening experience.

Breast and ovarian cancer organizations have made tremendous strides over the last 10 years assisting women with care before and after diagnosis. Pretty much any breast cancer patient with family history of any other cancer is offered genetic counseling and testing for genetic mutations.

Not so for men.

Prostate cancer is the most prevalent cancer diagnosed in men. In 90% of the cases, BRCA mutations are never discussed with the male patients — and they are not offered further testing. On the other hand, because male breast cancer is rare, BRCA mutation testing is usually discussed with a man diagnosed with breast cancer.

Life as a BRCA-related male breast cancer survivor brings with it many challenges, including annual follow-up tests and daily lifestyle changes.

First, your family has to be aware that each of your children, regardless of sex, has a 50% risk of also carrying a BRCA genetic mutation. Men can pass it to their sons or daughters just as women can. Most people do not understand this. They also do not realize that 50% of all the BRCA carriers in the world are men.

Education, not fear, is the key here. I have two sons and no daughters. My sister and co-founder of the HIS Breast Cancer Awareness Foundation, Inc., has three sons and no daughters. Because we both have a BRCA2 mutation, each of our children has a 50% risk of carrying the mutation. (To date, two of our five sons have been tested, and, thank goodness, both are negative.) They are all in their early 30s.

All of our boys are aware of their risks. We have had very detailed conversations with all of them. They realize they have to be very aware of any changes in their bodies. Changes in their breasts, changes in their bowel or urinary habits, detailed awareness of their skin and any moles, monthly self breast exams.

BRCA2 mutations can cause breast, prostate, pancreatic, melanoma, and ovarian cancers. There is a difference between BRCA1 and BRCA2 mutations, and I won’t go into detail here, but BRCA2 mutations tend to manifest a little later in life and also tend to be more aggressive in certain cancers.

Lifestyle changes are necessary, in my opinion, whether you’re a survivor or a previvor.

I believe in supporting my immune system with a variety of foods, including turmeric extract and green shakes.

A balanced diet is also a key. I prefer to eat organic foods whenever possible. I am also very careful to have no soy in my diet because the cancer I was diagnosed with was hormone-receptor-positive. I also avoid sugar and alcohol, as I have read studies linking both to cancer recurrence.

I also eat a few meals weekly of non-farm-raised fish. Some studies suggest that farm-raised salmon has less than half the amount of omega-3 essential fatty acids than wild salmon. I also limit my red meat intake.

Exercise is a key part of my life as well. I mix going to the gym with long power walks, hikes with my dog Cassius, or even 18 holes of golf without a cart. Most fitness apps today count steps. I aim for between 10,000 and 15,000 steps daily.

I also have regular screening and testing, or what I fondly call “scanxiety.”

For my breast cancer screening, I alternate between a mammogram and an MRI with contrast every 6 months. This means twice a year I have a detailed screening of my breast area, including the side that was removed by mastectomy.

I am 5 years out from my early-onset prostate cancer diagnosis. I currently have PSA blood tests every 3 months. If a man has his prostate removed, his PSA levels should be zero. Any elevation in PSA post-surgery is an indication that the prostate cancer cells may have migrated to another area or organ.

A few years ago, I began having annual endoscopic ultrasounds, which scan my pancreas for any lesions. I also have an annual colonoscopy.

I refer to all of this testing as “scanxiety” because every time I have a screening test, I’m anxious that the results could show cancer. I can’t relax until my doctors confirm the results are negative.

I have check-ups with all three of my oncologists either once or twice per year. I also go for a complete body check with my dermatologist once a year. (BRCA mutations have been linked to melanoma.) Because I’m taking tamoxifen for 10 years, I have an annual eye exam. While the number of people affected is small, tamoxifen is known to cause eye problems, including dryness, irritation, and cataracts, according to the American Academy of Ophthalmology.

At least once a month, probably more often, I do a self breast exam of my remaining right breast tissue. On the website, we show men how to do the easy, 3-minute male self breast exam.

Life as a survivor of any type of cancer has its challenges. Life as a male BRCA-related breast cancer survivor presents additional stress and concerns, but education is key. If you know what you might be confronted with, you are more likely to avoid any new problems. We have all heard that early detection is key. If you potentially carry a BRCA mutation or other genetic mutation, get tested. Your life and your children’s lives could depend on it.

Knowing your risks allows you to better assess your options. This knowledge is extremely powerful.

My four words to live by:

  • Educate
  • Advocate
  • Inspire
  • Live

Photos provided by Harvey Singer.

Harvey I. Singer is the co-founder of the HIS Breast Cancer Awareness Foundation, Inc., and the author of the book Sir, You Have Breast Cancer!


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