Stigma for Men With a Breast Cancer Diagnosis
The most common reaction from men when they are diagnosed with breast cancer is, "I didn’t know men got this" and usually following this statement is embarrassment. A newly diagnosed man often feels a stigma about having what the community perceives to be a female disease. Unfortunately, even before diagnosis, men have often delayed their medical appointments, and are presenting with symptoms later. And, anecdotally, men are more reluctant to seek timely medical care in general. The subsequent later diagnosis means their prognosis is not as good as with women who may get quicker attention once their annual mammogram picks up something of concern.1
Breast cancer in men
Then there are the statistics. In the United States, alone, around 2,650 men are diagnosed annually.2 I edit stories for the Male Breast Cancer Coalition, and we manage to find only a few percent of these men, either to share their experiences or to offer support. Huge forums like BreastCancer.org have limited men sharing their diagnoses and asking for support. Women, on the other hand, are seemingly better at asking for advice and helping to solve each other's problems.
The latest study on this topic, in the American Journal of Men's Health, found: “To prospectively reduce stigmatization in [male breast cancer patients], more publicity of MBC is needed, as well as gender-neutral communication and information material.” This study also found that there were differences in different settings within the cancer care system as well as in social surroundings. For instance, there was low stigmatization in the workplace environment. And, the men mentioned there was “more stigmatization in the cancer care system, and by female breast cancer patients within the care system, than in their close social environment.”3
Advocates for men
The good news is that things are changing. When Michael Singer was diagnosed with breast cancer in 2000, he was certain the doctor made a mistake, even though his sister had died from it two years previously. For over a year he would say he had chest cancer. Today he is a leading advocate for men, and especially for promoting breast cancer research that includes men. Harvey Singer, no relation, is another determined advocate for men, who publishes a website that spreads the word to reaffirm that the disease is genderless. He believes only by educating the public, will the stigma become less.
Recently, the FDA issued a notice asking researchers to consider including men when they submitted research proposals. Without the benefit of evidence-based research, men will continue to be treated using the research results of women.4
Time for pink charities to be more inclusive
For too long now men have been blindsided by this cancer. Year after year the pink charities run the same meme. Imagery is only of women and the color pink is everywhere. They have exacerbated the stigma men feel. At a huge breast cancer fun run, a few years ago, I asked for a turn at the microphone. The M.C., looking somewhat askance, passed it to me and I said, “this disease is genderless, men, if you feel a lump, get it checked out, or if you have a family history of breast or prostate cancer, join a screening program.” The microphone was almost pulled away from me after this. I’d broken the code of silence surrounding men and this disease. Well, I didn’t care. Unless we all make a noise, we’ll never change anything.
Impact of breast cancer
Men have breasts, too, and they can therefore get breast cancer. We might be only one percent of new diagnoses, but when you’re in that group with this disease, it’s just as real for you and your family as it is for our breast cancer sisters.5
Caregivers: Do you practice self-care?