How Men With Breast Cancer Support Each Other
Women with breast cancer can find many forms of support, much of it from organized groups. Men with breast cancer, on the other hand, might not know where to turn. After all, only one per cent of breast cancer patients are men, and the disease is almost universally perceived to be a "woman’s cancer."
It is not unusual for men to ignore lumps or other breast cancer signs that would send a woman to her doctor right away, because men often don’t even know that they can get breast cancer. And doctors might not pick up on the possibility of breast cancer, especially in young men. When Bret Miller found a lump at age 17, his doctor told him not to worry. Seven years later, in April 2010, he was diagnosed with breast cancer. He wanted to change the situation, and Bret says that his doctor believed that he "could make a difference and help others. With help from my mom, Peggy Miller, we formed the Bret Miller 1T Foundation.”
"Men need to know that they are not alone in this fight," Bret says in an email, ”nor that they should be embarrassed by their diagnosis. Everyone is born with breast tissue, everyone needs to remember that, so when you hear 'breast cancer,' you aren't as shocked.”
On social media Bret and Peggy found Cheri Ambrose, who started the Blue Wave, a New Jersey men’s breast cancer awareness organization in 2009.
In 2013 the Male Breast Cancer Coalition (MBCC) formed to support men with breast cancer and to promote awareness.
The MBCC website provides a place for men with breast cancer from all ethnic backgrounds and ages to tell their stories. An In Memoriam page reminds people of the sad fact that male breast cancer is so deadly mainly because it so often diagnosed at a later stage than breast cancer in women.
Kelvin Woods of Portland, Oregon, was diagnosed at Stage 2. He uses his work as a DJ to educate people about male breast cancer. In his story on the MBCC website, he says that black men can be a “macho group” who are not always proactive about checking out problems right away. He is working to change that. He says being in MBCC “helped out a lot because it brought to my attention all of the other men that are going through or have been through the same situation I was in.”
Kelvin Woods, DJ’ing at an event
Eric Henderson, diagnosed in 2016, points out how the group put him in touch with others who could answer specific questions.
“Being a part of the MBCC connected me with individuals I could ask questions to that no one else could answer,” he said. “For example, how did you feel the first time you went to a pool? How did it impact your sexual self esteem? Many people might be like, 'Guys don't think about that stuff,' but I sure did! I don't think I could have been as comfortable in my skin on my most recent vacation at the pool if I had not had the prior knowledge, discussions, and insight with others in the group.”
Because male breast cancer is rare, getting the appropriate treatment may be challenging. Eric went to experts for a second opinion.
Michael Singer has become a strong advocate for male breast cancer issues since his diagnosis in 2010. Singer wants men to be included in research and clinical trials. He also points out barriers that others might not think about. “Some things need to be discussed, like having to go for mammograms at woman’s clinics or being segregated at clinics because you’re a man. The paperwork still asks for menstrual cycles and breast feeding and pregnancies.”
For a man who is already feeling isolated or "unusual" because of his diagnosis, entering the women’s breast cancer world can seem overwhelming.
Michael “Mike” Singer
Treatment for male breast cancer is similar in most ways to that for women. Mastectomies are usually part of treatment. Because most cases are hormone receptor positive, men often receive hormonal treatments. Depending on the stage of the cancer, they may also receive chemotherapy and/or radiation. And, just as with women’s breast cancer, some men’s cancers spread.
Kirby Lewis has found the MBCC to be a great support to him as he lives with metastatic breast cancer. “Metastatic breast cancer is not a life sentence," he said, " it is not a death sentence, it is an opportunity, it is an opportunity to live. Love living life, make it precious, because it is, make it special, because you are. Just live!” Although treatments often leave him tired, he is finding joy in life through his faith and through marketing TroggBall, a toy he designed. He is using the game to educate people about male breast cancer.
Being a tiny minority in a disease that affects mainly women can be hard. Bret Miller says, “We are trying to just be included in the talk about breast cancer. We know that many, many more women are affected by this disease than men. All we want is for others to know that men are dying, too, to put a splash of blue in a world of pink.”
For More Information:
Men Have Breasts Too: Videos about male breast cancer
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Phyllis Johnson is an inflammatory breast cancer survivor who serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)(c) organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. She stays current on cancer information through attendance at conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. A retired teacher, she has been writing about cancer issues at HealthCentral since 2007.