UNLV public health researcher Marya Shegog highlights study exploring survivor stories, stereotypes, and health care disparities during Breast Cancer Awareness Month.
UNLV — As Breast Cancer Awareness Month kicks off this October, a UNLV public health professor is reminding people that men are also at risk.
Statistics show that about 1 in 8 U.S. women will develop invasive breast cancer over the course of her lifetime, leading to it be seen primarily as a “woman’s disease.”
But that view unintentionally creates a health disparity for men, who — with a lifetime risk of developing breast cancer sitting at about 1 in 883 — often face barriers to diagnosis and treatment due to a lack of awareness among the general public, policymakers, and health care professionals, says Marya Shegog, a director of health programs at The Lincy Institute at UNLV.
We recently sat down with Shegog to talk about her new collaboration with University of Alabama professor Raheem Paxton and the Male Breast Cancer Coalition that delved into the survivor stories of nearly 200 men who faced misdiagnoses, reduced access to care, and stigma to learn more about this phenomenon and what can be done about it.
How does the rarity of male breast cancer diagnoses contribute to stigma and barriers to treatment?
Men account for less than 1% of all breast cancer diagnoses in the United States — which consequently leads many in society to view it solely as a "woman’s disease.”
When men are diagnosed, in a very odd way their masculinity is questioned or challenged. Often the response is, “Well, you’re a man. Or are you a girl now?” When talking about stigma, one gentleman shared the story of how he was leading a breast cancer fundraiser yet was still afraid to come out and say he had it too.
Equally troubling, this lack of awareness creates an inability for doctors to diagnose men because when they see symptoms they don’t immediately think of breast cancer as being a potential cause.
The medical community has only recently began to hypothesize that hereditary breast cancer might extend to men too, and that men can not only carry the gene but it could express itself. In one of the survivor stories we encountered, it turned out that a man — who was finally diagnosed after a lengthy series of misdiagnoses — looked at his family tree and realized his mother plus 12 other female relatives had been diagnosed with breast cancer. As a result, he encouraged his younger male relatives to seek genetic testing and they found out that they carried the gene as well.
What are some of the most shocking, interesting, or egregious anecdotal stories that survey participants shared with your research team?
There’s a lack of consideration when it comes to men and the possibility of having breast cancer.
One man first found the lump while undergoing a pre-authorization physical to play high school football. The doctor said, “That’s just you becoming a man. It’ll go away.” So, the man ignored the lump throughout college and it wasn’t until he got his first job with health insurance that he went back to a doctor and received a breast cancer diagnosis. He’d had the lump for six years, cutting survival rates and options for treatment. Luckily, it had not metastasized.
The majority of the policies and qualifiers for breast cancer treatment are female-focused, so even when a man is diagnosed early on his pathway to treatment and recovery can be confounded. One example is a survivor in South Carolina who couldn’t qualify treatment because Medicaid policy requires that patients have a pap smear prior to obtaining breast cancer treatment.
Insurance is a part of the business of healthcare, so they create a set of guidelines that just checks boxes — whether there’s human interaction or not. For example, an insurance salesperson who was surprised that his own policy was retroactively canceled. Yet another person who called to get approval for a mastectomy was told that the insurance company doesn’t approve of sex-reassignment surgery.
Some policies require mammograms, which compresses the breast between two plates. Now, imagine that for a man’s breast, which is so much smaller than most women’s. One man recounted how bruised he was from the mammogram. And to make matters worse, the post-recovery kit included a pink ice pack with instructions to “tuck it into your bra.” The person performing the procedure just handed it to him without considering finding a way for the male patient to effectively adhere it to the skin, perhaps with compression tape or an elastic bandage.
What do the men's stories say about gender roles and bias, and health disparities?
Sometimes in our vigor to address a health disparity, we can create another one. If our clinicians aren’t prepared or don’t have the skills to readily identify breast cancer in patients, it means that men are going without getting checked — this creates a complication in itself and cuts men out of the picture.
The story surrounding breast cancer has been solely women-focused and therefore omits the opportunity for men to share the story. And that means they’re omitted from the narrative and from treatment.
With gender roles, a man having breast cancer has nothing to do with his level of masculinity or sexuality. The fact that our society makes that statement is problematic in the least.
From your perspective, what lessons should people take away from this, and how can those lessons be put into action?
Years ago, women were dying of breast cancer in large numbers simply because doctors hadn’t figured out the science behind it. My suspicion is there are now more men dying from cancer that may have started in their breast than what we know and it’s simply because they’re not being tested until the cancer has metastasized.
Men and women and especially parents — everyone — needs to know that breast cancer does not discriminate for just women. Policies around breast cancer need to be considered without gender bias. They need to be written in a way that anybody who’s diagnosed can get treatment in an expeditious manner.
I think health care professionals need to change their focus. They need to be taught and be aware that it’s genetic. So much of our preventative measures include gene mapping. Men who may be at risk need to know they’re at risk and they need to be tested so they can act accordingly.
When women get a physical, they’re asked to fill out a form that includes questions about family history surrounding breast cancer. The same informational posters hanging in OBGYN offices need to be hanging in general practitioners’ offices so that men can be aware too. Those family history questions about breast cancer should be universal.
Everyone — men and women alike — should know their risk for getting breast cancer. And if they are at high risk, make sure they’re proactive with screenings annually or genetic testing. Really, it’s about knowing your risk and what you can do to prevent it.
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Media interested in scheduling interviews should contact Keyonna Summers, UNLV Media Relations, at [email protected] or (702) 895-0898.
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