Imagine that you are a male, sitting in a radiology waiting room. You just had a mammogram and a fine needle biopsy on your breast tissue. In your hands rests a pink pamphlet about breast cancer that prominently displays a woman checking her breasts. Surrounding you are women's puzzled and surprised expressions at seeing you in a bright colored pink Jonny that doesn't quite fit your frame. Someone calls out your name and as you enter the consultation room, you hear the words, "You have breast cancer." It is not often we read stories about men with breast cancer. Yet for some men, this scene is their reality.
I talked with and surveyed almost 100 men with hereditary breast cancer and/or at high risk for developing breast cancer. We are just beginning to understand the challenges men face in grappling with what is so commonly thought of as a woman's disease.
By listening to men's breast cancer narratives, it becomes clear that many of the men I spoke with felt the health care profession abandoned and trivialized their health concerns and worries even when, on a routine physical examine, they presented with a small lump in their breast and/ or some discharge coming from one of their nipples. Their initial symptoms might stretch out for months or even years before any medical intervention was initiated on the part of a health care provider. No cancer history was taken at the time of their initial examination, and for those men with a history of breast cancer in their families, none were told that perhaps they might, in fact, harbor the BRCA 1/2 mutation for breast cancer.
It is not surprising, then, that men who undergo genetic testing for the BRCA 1/2 breast cancer mutation get tested much later in their lives compared to women, and are diagnosed at a more aggressive stage that places them at a greater risk of dying from breast cancer. One participant in my study stated, "No one told us anything about having a hereditary risk for cancer. When I say no one, I had asked an oncologist in San Diego ... about it, and he told me it goes from mother to daughter and I shouldn't be worried about it."
Another participant stated, "Not only have I had men tell me that they didn't need to worry because it can only be passed to women, I've had doctors tell me that." Misinformation such as this is common, and also contributes to men's lesser awareness of the BRCA genetic mutation and its health implications.
Being at high risk for breast cancer also flies in the face of men's sense of their masculine identity that often promotes emotional distance and avoiding feelings of being vulnerable and often brushing off their own medical issues. As one of the men in this study explains, "There's an easy explanation for men's breast cancer risk denial. It's called another mutation, and the mutation is the macho gene." Such a "macho mentality" makes some men unlikely to seek genetic testing and health care treatments.
Understanding men's bodily vulnerabilities needs addressing by the healthcare community. By blaming men for their reluctance to be tested or seek treatment, we ignore a critical examination of a healthcare system whose very clinical practices often reflect a set of hidden gendered assumptions that perhaps only rise to the surface when a highly gendered disease like breast cancer comes to the fore.
Men's breast cancer narratives can offer the medical community important lessons and recommendations for general clinical practice. For starters, any general physical exam should specifically ask men about their general health concerns, one that requires careful listening. It means clinicians need to think outside their traditional gender role box regarding men's healthcare. Yes, and by the way, it means checking men's breasts! That is what some of the men in my study wanted me to tell you.
When I asked one of my male participants what, if anything, their doctors could have done better after receiving their breast cancer diagnosis, one said, "All I wanted them to do was to talk with me one-on-one and to listen to how I was feeling. Instead, what I got from the medical team was more clinical talk about my diagnosis." What men in my study also taught me is that when they feel they are in a safe space, one where they can speak freely, they can and do share their medical concerns and issues as well as their hopes and fears for the future.
The lack of research into men's experiences with BRCA 1/2 hereditary breast cancer is disconcerting, and the healthcare field needs to develop a broader understanding of how illness, especially the threat of having breast cancer or a breast cancer diagnosis impacts men's lives. The Boston College BRCA Men's Study addresses this knowledge gap and invites you to understand the complicated emotional, social, economic, and psychological factors that come into play for BRCA 1/2 positive mutation male carriers and how it affects their loved ones.
But we need to learn more. If you are a male who is at high risk for breast cancer or who has taken the genetic test for the BRCA1/2 mutation, or who has been diagnosed with breast cancer, we want to hear from you. To take our survey and contribute to our research, please visit https://tinyurl.com/bostoncollegeBRCAsurvey. You can find more information about our research on our Facebook page, Boston College BRCA Study (https://www.facebook.com/BostonCollegeBrcaStudy), and keep up with what we are doing by following us on Twitter (@BRCAStudyBC).
Don't be another invisible man in a sea of pink. Let your story be told.
Dr. Sharlene Hesse-Biber is a Professor of Sociology and Director of the Women's and Gender Studies Program at Boston College. Her latest monograph, Waiting for Cancer to Come: Genetic Testing and Women's Medical Decision Making for Breast and Ovarian Cancer (University of Michigan Press), will be published June 2014. You can learn more about her past and current publications and research at www.drhessebiber.com.