The Male Breast Cancer Coalition Together We Will Change the World

February 2020 Vol 11, No 2

Categories:

Breast Cancer

As recently as 8 years ago, no one talked about men with breast cancer. Few individuals, even within the medical communities, understood that men also could get breast cancer. The men who were diagnosed with the disease were quiet, secretive, embarrassed for others to know that they had a “woman’s disease.” Their treatment for breast cancer included pink hospital gowns and humiliating experiences in women’s mammography centers. Often, it went undiagnosed for months, sometimes years. Bret Miller, a survivor from Kansas City, is the youngest recorded male worldwide to contract breast cancer. He was just 17 years old when he discovered a lump during a high school sports physical. For 7 years, Bret was told by various doctors that it was nothing to worry about—just “calcium deposits that would dissipate as he got older.” At 24, Bret had a mastectomy for breast cancer. He promised his doctor that he would become the face of male breast cancer and do everything he could so that no man would ever have to be alone after hearing the words “you have breast cancer.” He and his mother, Peggy Miller, launched the Bret Miller 1T Foundation and began attending local 5K races and breast cancer events in Kansas City in an effort to bring awareness to the risk that men face.

Halfway across the country, in East Hanover, NJ, Cheri Ambrose had begun a similar crusade. A dear male friend had been diagnosed with breast cancer and undergone bilateral mastectomies. As Cheri watched, painfully, as her friend changed from a vibrant, outgoing man to a virtual shell of himself, she knew she had to do more. She joined forces with another local woman who had lost her husband to the disease and formed The Blue Wave to raise money earmarked for male breast cancer–related research. And then she began to search the Internet for others like her friend. Her search ultimately led her to Bret and Peggy. Through social media and an hour-long phone call with Peggy, the Bret Miller 1T Foundation manager, they decided to join forces and launch the Male Breast Cancer Coalition (MBCC) on February 13, 2014. Together, they pledged, they would change the world.

Advocacy Is the Key to Awareness

A nonprofit “awareness” foundation, the mission of the MBCC is to save lives through advocacy and education and by serving as a complete resource for any and all support facilities and clinical information leading to the diagnosis, treatment, and prevention of male breast cancer. MBCC is a primary source of support and connection for men who are battling this disease and their families. It has connected with more than 500 men globally. Men like Michael Kovarik, diagnosed in 2007 and currently living with stage IV metastatic breast cancer. “The doctor’s words hung above me in the air as I struggled to accept the concept of a man getting breast cancer,” he says. “Inside my head, numerous thoughts throbbed erratically, Breast cancer? But, I’m a man. Years after my treatment, I still harbored a sense of being alone. I had yet to hear about or meet another man with breast cancer. I was this tiny, blue island in a sea of pink. And then in October 2014, I received an e-mail inviting me to connect with the MBCC. As I read the numerous personal stories of male breast cancer survivors on the coalition’s website, I no longer felt alone.”

Today, the MBCC is a virtual, safe “meeting place” for men with breast cancer where they can talk freely and openly about their journey, share their experiences, and collaborate with women and men around the world who are also working to educate others. Out of this remarkable community has grown a dedicated, passionate band of advocates who work to save others from the loneliness and stigma that even today permeate the broader breast cancer arena. But more importantly, they are helping to bolster the organization’s work and expanding, in leaps and bounds, the male breast cancer awareness campaign. These individuals have been essential to building the MBCC into a global network of survivors and supporters who have pushed their agenda and succeeded in their quest to secure a presence at some of the most important global breast cancer conferences. They fight not only to increase awareness, but for “equal access” to treatment for men with breast cancer. And they are succeeding; they have already been instrumental in getting men included in 6 clinical breast cancer trials.

Male Breast Cancer Coalition Fest 2017
Attendees of the 2017 Male Breast Cancer Coalition Conference in Kansas City, KS.

It’s Still a Fight to Be Heard, to Be Seen

Despite its achievements, the MBCC still has a lot of work ahead. Constant and consistent advocacy is essential if men are to be included in the breast cancer conversation more regularly and more prominently. Men must be recognized as a crucial part of the survivor and “thriver” (those living with metastatic breast cancer) populations, not just as occasional anomalies in the “sea of pink” but as an important subset of the community. Broader advocacy efforts targeted toward the research community are needed so that men gain more access to major breast cancer trials and studies, and there must be more studies focused on the unique aspects of the male version of the disease. There needs to be a more aggressive outreach to the pharmaceutical industry and to the legislative bodies that regulate insurance coverage of lifesaving cancer drugs to ensure that men with breast cancer receive the best care, the same care, as women. And medical schools need to step up to the plate by ensuring that education about breast cancer in men becomes part of every standard medical student’s curriculum.

The result of this focus on advocacy will hopefully be more lives saved. Currently, the risk for a man to be diagnosed with breast cancer in his lifetime is 1 in 833, with the average age at diagnosis between 60 and 70 years. But the average age of the men with whom the MBCC has connected over the past 5 years is significantly younger—between 50 and 60 years, with some between 35 and 50 years, and even as young as 18 years. According to the American Cancer Society, 2670 men in the United States will be diagnosed with breast cancer in 2019, and an estimated 500 will die of the disease. A lack of awareness and/or misdiagnosis contributes significantly to this mortality rate, and men are often diagnosed at a later stage than women because they are less likely than women to report any warning signs or symptoms of breast cancer.

Unlike the statistics for women, which reveal a decline in mortality over the past 10 years, new cases of male breast cancer are up by 22%, and the mortality rate has increased by 19%. Advocates collectively attribute much of this rise to the lack of public awareness, an increase in environmental issues, frequent misdiagnosis, and the belief—heard more often than one might expect, even today—that “breast cancer is a women’s only disease.”

And so the MBCC presses on, working persistently to change the way male breast cancer is viewed by everyone: members of the medical and research communities, pharmaceutical and insurance companies, and the general public. “Our mission is to educate people all around the world about the risk that men face,” Cheri says. “Ultimately, we must give men the same fighting chance as women diagnosed with breast cancer. As with lung, liver, and brain cancer, this disease does not discriminate. It knows no gender, age, or race. The truth is, everyone has breast tissue, and everyone can be at risk for developing the disease. We hope that someday regular breast checks will be included in all annual physicals for men, along with updated intake forms that request familial cancer history. This would go a long way toward saving lives. Male lives.”

Bring on the Experts and Take It to the Next Level

In an effort to formalize its education and advocacy programs and bring experts together to discuss the issues, the MBCC launched an annual conference in 2017. Held in different cities across the United States (Kansas City, New York, and Orlando to date), the conference brings together survivors from around the world with renowned experts in the research, pharmaceutical, and medical fields who are hand-picked for their experience, expertise, and clinical work with cancer and their understanding of the male breast cancer epidemic. Survivors and their families get to meet specialists who can share up-to-the-minute information about new clinical trials and other important developments in the breast cancer research and medical communities. In turn, medical experts have the chance to garner knowledge and information about the male breast cancer experience from a larger group of male survivors than they would ever encounter in their practices.

Cheri emphasizes that many of their survivors had never encountered another man with breast cancer until they discovered the MBCC. It is particularly heartwarming, she says, to see these men interact with one another and share their journeys, their angst, their challenges, even their treatments and side effects. The macho walls come down as they connect, share, and form a bond of brotherhood.

To Survivors, a Message That “You Are Not Alone”

Whenever any of MBCC’s representatives connect with a male breast cancer survivor, the welcome, the embracing, and the advocacy training begins. Each survivor receives a Men Have Breasts Too T-shirt, their own MBCC business cards, an MBCC banner, personalized brochures, and various handouts and information on breast cancer in men that they can bring to local events (such as health fairs and 5K races) and distribute to their oncologists and other doctors.

Every survivor is also interviewed, and the story of his journey is published on the MBCC website. The website has become an international hub for information, resources, and survivor stories, which are extremely important. They are there so other men, survivors, co-survivors, and their families will learn that this disease is not as simple, nor as rare, as one might think. All these stories—and there are currently 175 on the site and over 100 in the works—demonstrate to the visitor that breast cancer can happen to anyone, and more importantly, if you are male, and it happens to you, you are not alone.

Creating and Inspiring Advocates, Collectively and Individually

How do you build an ever-growing advocacy program? For MBCC, it’s been 1 cofounder (and 1 mother, Peggy Miller!), 1 male survivor and 1 co-survivor at a time. Cofounder Bret Miller is one of the most visible advocates; his growing list of media appear­ances includes coverage by People Magazine (with fellow survivor Michael Singer), the local Kansas City ABC-TV affiliate KMBC (Channel 9), FOX 4, and more. He’s appeared on “The Doctors” and the “The Katie Couric Show.” Most recently, he appeared in a video that was shown as part of an episode of the hit ABC-TV show “A Million Little Things,” an episode in which one of the lead characters discovers he has breast cancer. The video received over a million online hits in less than 3 days. In 2013, Bret was selected to be one of the Ford Motor Company’s 11 Warriors in Pink “Models of Courage”—extraordinary patients, survivors, thrivers, and co-survivors who are enlisted to help empower those currently in the fight.

Cheri is more the “on the ground” behind-the-scenes advocate. Since she began her crusade with the MBCC 5 years ago, she has been instrumental in helping the MBCC spread awareness by pursuing official proclamations, annually, from every state governor recognizing the third week of October (National Breast Cancer Awareness Month) as “Male Breast Cancer Awareness Week.” Last year, she succeeded in securing proclamations from 45 states. Her goal is to have all the states make it permanent; to date, New Jersey, Massachusetts, and Pennsylvania have all signed bills making it permanent. Cheri leads and recruits local male survivors for appearances at health fairs, races, and other events in her local metropolitan area (New York and New Jersey), and like her cofounder Bret, never lets an opportunity pass her by. She has been granted scholarships for the American Society of Clinical Oncology (ASCO) annual conference and the Metastatic Breast Cancer Conference and received an invitation to the annual Breast Cancer Conference in Japan. She hosts a table at the annual 2-day Health and Fitness Expo for WNBC and Telemundo each year, attended the annual National Comprehensive Cancer Network (NCCN) summit in Washington, DC, and held the first Male Breast Cancer Combined Conference to introduce their newly formed Medical & Scientific Advisory Council. Most recently, she was selected to participate in Project LEAD, the National Breast Cancer Coalition’s premier science training program for activists.

Other survivors across the country appear regularly on local television shows. Their spouses and partners are also very much aligned with being part of the advocacy program. Pat Washburn of Omaha, NE, lost her husband Marlyn in May 2017. They found out too late that he had breast cancer, and he died just 5 months after his diagnosis. Washburn’s loss inspired her to become one of the MBCC’s most vocal advocates; she has honored Marlyn’s memory by turning his beloved car into a moving billboard that helps publicize the critical message that breast cancer “does not discriminate.” She and “Marlyn’s Mobile,” as she calls it, have traveled all around America. She wants people to know that men can get breast cancer, she says, and hopes to keep other men and their families from having to go through the terrible journey and loss that she endured.

MBCC members vie for key advocacy positions on many national foundation boards and apply for scholarships to conferences like the Metastatic Breast Cancer Alliance (MBCA) and the NCCN Peer Review Panel. Their presence is visible at many of the major breast cancer annual conferences, such as the ASCO meetings and the San Antonio Breast Cancer Symposium, and they utilize these opportunities to meet oncologists, other doctors, and researchers, and in many cases, to educate the professionals.

Male Breast Cancer Coalition Founders
Male Breast Cancer Coalition Founders Cheri Ambrose and Bret Miller.

Partners in Easing the Path to Early Detection and Education

The MBCC takes seriously the meaning of the words together we can do more. It has become an active, involved, and supportive member of the MBCA, the Breast Cancer Research Foundation, Living Beyond Breast Cancer, METAvivor, the National Breast Cancer Foundation in Australia, the American Cancer Society, and many of the Susan G. Komen local affiliates across the country. Through advocacy efforts and communication with these organizations, they have been motivated to include men, not only in their annual campaigns but also in their organizational print materials, websites, and social media. Each of the partners is featured on the MBCC website as a partner and a resource.

Recognizing that men need reminders about the risk of breast cancer, just like women do, MBCC partnered with Hospital Corporations of America (HCA Healthcare), one of the largest for-profit operators of healthcare facilities in the United States and the United Kingdom, to design dual-sided, self-breast exam cards for both men and women. The cards are available in multiple lan­guages in connection with the Sarah Cannon Cancer Center and the Breast Cancer Hub and can also be downloaded from the MBCC website.

One of the MBCC’s staunch supporters and partners in public outreach is the New York Cancer Resource Alliance (NYCRA), which under Robert L. Bard, MD, helped establish the first male-friendly breast cancer diagnostic facility in New York City. NYCRA created a “Get Checked Now!” project to engage all community organizations, other nonprofit groups, and professional associations in promoting the singular message that we all must develop a proactive mindset about prevention and early detection for men. “The Get Checked Now!” group incorporates numerous unique (rare) cancer awareness voices to join in public speaking events. One of these is NYCRA’s “First Responders Cancer Resource” project, which recognizes that there is a growing number of 9/11 firefighters who are being diagnosed with breast cancer, seemingly due to the high exposure to toxins and environmentally hazardous materials.

Dr Bard, who was one of MBCC’s first medical advisors, took the initiative to design Bard Cancer Diagnostics (BCD) as the first truly comprehensive imaging facility of its kind in the New York City area. A common belief among male survivors is that the number of male breast cancer cases annually may in fact be higher than cited—that the numbers are largely swayed by the emotional stigma that prevents men from seeking attention even if they suspect that something isn’t right. And even if they do, most breast imaging centers are designed to accommodate the particular needs of women (emotionally and physically), with little or no effort to make the male patient feel comfortable. Especially in the case of male breast cancer, BCD’s core value revolves around compassion—for all types of cancers, and for all stages of malignancy—but especially for cases of male breast cancer. The practice is dedicated to a noninvasive and immediate response approach to cancer screening. Identifying male breast cancer is a specialized discipline with innate differences from female breast cancer. For all men with varying ranges of concerns or the slightest hint (from other physiological exams) of breast cancer, BCD implements a world-proven and highly accurate program that has brought peace of mind to countless patients seeking a second opinion and sound strategic treatment planning from expert diagnosticians.

The Next 5 Years

The MBCC has accomplished an enormous amount in just 5 years. Collectively, it has done for male breast cancer what Susan G. Komen did for female breast cancer: it has brought the conversation out of the closet and into the light. The commitment to global education and support will continue, with additional lead advocates announced; a proposed expansion of the website; the continued expansion of their reach globally, participation in more global conferences such as the ABC5; and the hope of male-specific research efforts, to name just a few. The MBCC will continue to work to remove the stigma that surrounds breast cancer.

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Last modified: January 27, 2020

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