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Ken's Story BRCA mutation carrier and previvor

patient story preview ken

When people relay their family history of breast cancer, their list usually starts with their mother, grandmother, or sister. Not so for Ken Wagher. When he rattles off his family history it starts like this, "My father had breast cancer. My grandfather had breast cancer. My two aunts and a great aunt had breast cancer." The dizzying list goes on and on. In total, ten family members have been afflicted with some form of a hereditary cancer.

Ken is part of the small percentage of men with a family history of male and female breast cancer. His journey in discovering his hereditary risk factors began with the 2009 diagnosis of his father, Arthur Wagher. "My mother always suspected it due to my grandfather," Ken explains. Ken's grandfather, who had a mastectomy as part of his treatment, died from complications related to his breast cancer. Ken's aunt, his father's oldest sister, died at age 41 of breast cancer and another aunt, his dad's youngest sister, had breast cancer in 2008. Due to the family history, genetic testing was recommended to his dad when he was diagnosed with the disease. To no one's surprise, Ken's dad tested positive for a BRCA mutation.

From the beginning of this journey, Ken's family was open with communicating about genetic testing. "A lot of talking was done in part due to the lack of and miscommunication between my father and his siblings." For reasons that remain unclear to Ken, sometimes information was not shared with his dad or family. "I'm not sure if this would have changed anything," he says, a bit remorseful. But one thing is certain: Ken believes if his father had more information about hereditary risks, he would have had an opportunity to explore preventative screening measures for himself.

Ken Wagher with relativeSo when the time came for Ken and his siblings to discuss their own genetic testing, they were "very open with each other about it. We all kind of wanted it discussed at least," he says. "I am one of seven children. Four girls, three boys. I had three siblings get tested prior to me, with mixed results." Of the four siblings tested, three, including Ken, have the BRCA mutation. Ken's other three siblings were open about not wanting to have genetic testing. He recalls, "There were some heated debates and small family quarrels over this." Ultimately, it was their decision to make.

About three years ago, Ken had BRCA genetic testing. "It was kind of numbing," he remembers. "I already had braced myself for it, but with all that had been going on in my life, I am not quite sure I have even dealt with it to date."

After receiving his positive test results, Ken began a regimen of preventative care. "I have yearly check-ups with an oncologist, along with having a clinical breast exam." Ken also does what he calls, "breast self inspections." His BRCA-positive sisters have had the preventative surgeries. "I have been told that this was not an option for me," he says. When Ken reaches age 40, he and his physician will evaluate additional screening options such as a mammogram and prostate cancer screenings.

Unlike other men who may be uncomfortable with the topic, Ken doesn't mind talking about male breast cancer. He's found there is no stigma in having a family history of male breast cancer, commenting, "If anything, it has caused us to answer more questions for people. With all of the attention on breast cancer as of late, people are generally interested and inquisitive."

Like any health issue, there are challenges in managing and coping with medical care. In addition to breast screening, Ken also screens for prostate cancer, which he is also at increased risk of developing. "It's all a challenge," he admits. "I like knowing what may be coming," Ken says. "It gives me peace of mind being able to do everything in my control to help or be prepared for the situation." So, Ken is very good about keeping up with his medical appointments and not letting anything lapse. Staying physically active and giving up chewing tobacco, which Ken says was no small feat, is part of his personal breast cancer prevention plan.

"Take ownership," he recommends to others, "and control what you can control, let go of what you can't. Take good care of yourself. I don't know if being in better shape would have extended my father's life," he adds, "but I am relatively certain it would've increased his quality of life towards the end."

Above all, Ken tries not to think too much about it at all. He looks ahead to what might be. "I am hopeful that in the future," he says optimistically, "there are more preventative options for dealing with male breast cancer."