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Gene's Story Anonymous BRCA mutation carrier and previvor

patient story gene2

When Gene's sister told him and his wife she carried a BRCA mutation, the alarm bells silently went off. All the important women in Gene's life — his wife, mother, and sister — had all had breast cancer. Gene's wife does not have a BRCA mutation, so when his sister revealed her BRCA news, "My wife prevailed on me to get the test," he says. "My family history of cancer increased my concern for my children and grandchildren." He wanted them to be aware and take appropriate action, if necessary. This was the impetus for Gene's journey to uncover the truth about his genes. Unlike many genetic conditions, BRCA can be inherited from just one parent who is a mutation carrier. "If the test showed that I did not have the gene [mutation], we would then know our son and daughter don't have it."

After meeting the genetic counselor and going through the routine testing, Gene learned he, like his sister, carries a BRCA mutation. There was never any doubt about sharing his results. "My wife told our son and daughter and suggested they be tested. They understood the importance of being tested and did so willingly. I was relieved to learn that they do not have the gene [mutation]."

As a male BRCA mutation carrier, Gene was advised to perform routine breast self-exams as screening. "I do an occasional breast self-examination, usually after being prompted to do so by my wife. When she reminds me, usually a couple of days after, I do it," he explains. Gene seems appreciative, though, that his wife is much better at remembering the breast self exam than he is, "I'm not that good, she's really good," he laughs.

At his wife's prodding, Gene has adopted a more sensible balanced diet, although he admits again, she is much better at it than he is. "She has been after me a long time to eat better. I bit the bullet and did it," he says. "I still have my sugar cravings and indulge myself with my desserts and pastries but I don't overdo it too much. I do eat a number of fruits and vegetables a day, a salad a day, and I cut out sodas about a year ago," he adds.

"My general philosophy is to stay as mentally and physically active as possible. My own view," he patiently explains, "is that we all have risks, heart issues, you name it, they're out there. I'm an advocate of exercise. I believe that staying as physically and mentally active as one can for as long as possible is the most important thing. I believe that it reduces stress, something I consider a leading cause of illness, and helps to maintain or at least slow the deterioration of one's physical and mental abilities. Exercise is one form of stress relief that I think is a good thing."

Gene, who is now 71 and has been a runner for 40 years, engages in a variety of activities to keep fit. "I bike when the weather is nice. I love to walk. When we're in interesting cities, I walk five miles, eight miles in the city, at a time." Even his son and daughter, who are BRCA mutation negative, stay active and eat healthy. "My daughter is involved in athletics and my son does his exercises to try to keep in shape too. My daughter is much more conscientious in terms of healthful eating than my son," he says. Other than the "prompted-by-my-wife breast-self-exams" and reducing his sugar intake, Gene says, "I'm not really doing anything different than I would do without knowing that I had the BRCA gene."

Gene decided to share his story anonymously because in general, he does not post information about himself online and prefers to keep things private, BRCA and beyond.