Male breast cancer is rare, but it’s not that rarely inherited

When I was a clinical genetic counselor, I met with many men who had been diagnosed with breast cancer for genetic counseling and genetic testing. Counseling male breast cancer patients about genetics was often very different for me than counseling female breast cancer patients. I think the main reason for that is men and women are different and have different needs. In my experience, men diagnosed with breast cancer were often shocked that a) they developed breast cancer and b) that it could be inherited. I want to take this opportunity to share some of the information men found helpful when discussing their diagnosis and options for genetic testing. 

First, some facts: Men in the general population have a 0.1% chance to develop breast cancer in their lifetime. If a man has a BRCA1 or BRCA2 gene mutation, they have a 5-10% chance to develop breast cancer in their lifetime. That may not seem like a huge chance at first, but think about the increased risk compared to the general population. This information coupled with the fact that up to 1 in every 400 people in the U.S. have a BRCA1 or BRCA2 gene mutation and things may start to seem a little less rare. In addition, there are other genes that have recently been discovered to play a role in hereditary male breast cancer.  All male breast cancer patients should consider undergoing genetic counseling and testing due to the potential implications for additional cancer risks for them and their family members. Remember, family history is important but may not always be a clear indicator of hereditary breast cancer, especially if there are a lot of men in the family. For example, in Bill’s last post, he discussed that he didn’t uncover any breast cancer in his father’s family until more distant relatives. Those relatives were related through uncles who had prostate cancer which can be common in men, but can also be a clue to hereditary cancer.

Second, some misconceptions: When a cancer is rare, it is called an “orphan cancer” as Bill mentioned in his post. This doesn’t mean that it has been abandoned in terms of research and advancing treatments, but it does mean that it is difficult to collect enough patients with that type of cancer to make advancements as quickly as common cancers (large numbers of people are often key for helpful research). Men are different than women, no doubt about that, but the types of breast cancer they are diagnosed with aren’t so different. Most men and women are diagnosed with ductal breast cancers (starts in the milk ducts) that have estrogen receptors (ER positive). There has been a lot of research done on effective treatments for these types of female breast cancer, so oftentimes the treatment for male breast cancer is the same as it would be for female breast cancer.  That may be comforting to some and disheartening to others. If you have been recently diagnosed with male breast cancer, don’t be afraid to ask questions if you are concerned about the similarities/differences between male and female breast cancer to determine the best treatment plan for you.

Third, men have the right to have a different experience: Yes, breast cancer is dominated by women and everything is pink. That has been fantastic for creating breast cancer awareness, empowering women, and advancing research. I am truly supportive and amazed at how far the field has come in the last decade, but the truth is men may feel uneasy with this new diagnosis, especially when they are in a women’s clinic surrounded by pink. It is important to have men stand up to create awareness for their sector of this disease. I commend Bill for being an advocate for this cause and bringing his experience to light to help others and look forward to future blogs from him addressing many of these issues.  To create additional awareness for male cancers, particularly male breast and prostate cancers, we will be adding new information to the hereditary cancer patient website in the near future.  

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