Sharing My Diagnosis and Genetic Testing With Family and Friends

While it’s difficult for anyone to come to grips with a cancer diagnosis, it becomes more challenging having to share the news with family and friends. Especially when you are a man telling them you have breast cancer. People may look at you with a deer in the headlights stare….men get breast cancer? This was the reaction from many, as nearly 70% of those I shared the news with never knew men could get breast cancer. The common question was “how did you detect it”?

Discussing my genetic testing, in particular my BRCA2 mutation, was even more difficult for many to comprehend. Few understood the hereditary aspect of cancer. One of my friends even said that testing positive for a gene mutation makes it seem like cancer can be “contagious” in a family, since it increases the chances of developing cancer; however, this isn’t really the case.

Sharing my genetic test results with my family was much more difficult for me. As you may expect, their reaction was to ask “Am I going to get cancer too?”. Sharing the news with my two sons was challenging, as they asked many questions, and I had limited answers. The easiest way I could explain it to them was to say that I wished I wasn’t the first one in the family to be tested. If my father, who most likely carried the mutation and passed it onto me, had been tested, I may have been tested earlier in my life. Then I would have started cancer screening at an earlier age for various cancers and would have made a conscious effort to be aware of any changes within my body. My sons understood this explanation and realized the importance of genetic testing and the potential impact on their medical care.

The final step for me was to notify my two siblings and cousins of this newly discovered genetic mutation that runs in our family. I had a conversation with my siblings, and I sent letters to all of my cousins, including a copy of my genetic test results. Surprisingly I only heard from a few of them; however, those that called asked meaningful questions. I concluded that not everyone wants to know if they carry a genetic mutation, but in my letter I made it clear that I would be happy to discuss any details with them. 

I have been truly surprised over the past two years since my diagnosis how so few people are aware of the genetic component of cancer. I have shared my story with many involved in the medical profession. Although many of them are outside of the field of cancer, I’ve found that their understanding of BRCA1/2 gene mutations is either limited or non-existent. I also had friends who were aware of the BRCA1 and BRCA2 genes, but thought they could only be carried by women, and this is unfortunately a common misconception. These personal anecdotes and stories further my passion to continue to create and increase awareness of hereditary cancer through this blog and other avenues.  

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