• Male Breast Cancer: My Badge of Honor

    Personal Stories, Advocacy

     

    My life was turned upside down in 2008 when I received the devastating news that I had stage IIB breast cancer. Like most men who are diagnosed with breast cancer, I found it completely by accident (getting breast cancer is not really something we think about).

    It was such a roller coaster ride. I found the lump in the shower on a Friday morning, had an ultrasound that afternoon, a biopsy the following Monday and by Wednesday (coincidentally, my birthday!) I was having surgery.

    I remember hearing the words, "you have invasive ductal carcinoma," and feeling shattered to the core. At first, I was embarrassed by my diagnosis… as if somehow it would be better if I had a "male form" of cancer. But I quickly decided that I would take this disease head-on. It would not define me or change the way I lived.

    When my chemotherapy made me feel like lying down, I'd go play golf. When it made me feel sick, I'd have something to eat. My family was incredibly supportive throughout my journey (albeit surprised to learn that I had breast cancer), and while I have yet to meet another male breast cancer survivor, I found support in many places.

    I felt called to share my unique experience with others, so I retired early from my position as Academic Dean at Utah Valley University, and I began to write. When I finished my book, I decided it was time to get involved with my local Komen Affiliate – Komen Greater Nashville.

    Through the local Race, I was connected with Komen's Advocates in Science (AIS) program – a community of dedicated volunteer advocates who bring a patient voice to research and advocacy. In 2015, I was appointed to be a member of the AIS. My first opportunity to really make an impact came when I was awarded a Travel Scholarship to attend the 2016 Susan G. Komen Advocacy Summit in Washington, D.C. It was my first time as a male breast cancer survivor to attend any event that focused on breast cancer.

    We had three asks for our elected representatives:

    • Increase federal cancer research funding for the National Institutes of Health (including increased funds for the National Cancer Institute);
    • Protect funding for the National Breast and Cervical Cancer Early Detection Program, which provides lifesaving breast cancer screening to low-income, uninsured and underinsured women who don't qualify for Medicaid; and,
    • Cosponsor oral parity legislation (so patients aren't paying high costs for medications that can be taken in pill form, rather than traditional IV).

    The Summit began with a training where we learned the basics about the legislative process and I probably made the biggest faux pas of my life. I asked the very distinguished woman sitting next to me, "Are you with Susan G. Komen, or are you a supporter of the organization?" She very politely turned to me and said, "My name is Nancy Brinker, and I am the founder of Susan G. Komen. Susan Komen was my sister."

    How do you respond to something like that?! Nancy Brinker (who I had obviously never met) is my hero, and I was mortified. Her work with breast cancer has affected millions of breast cancer survivors, and saved countless lives; her dedication to curing this disease is truly remarkable. After sitting with her for over two hours that afternoon, I realized that she is a very special person, and so dedicated to what she is doing. It was truly an honor to meet her.

    As we prepared for our meetings the next day, one of our three federal policy priorities really started to speak to me: oral parity. While most chemotherapy drugs used for cancer treatment are administered intravenously, many are now available in oral form. Unfortunately, insurance coverage has not kept pace, and some patients may face out-of-pocket expenses as high as $5,000 – $10,000 a month! I realized that although there are two bipartisan bills currently supporting oral parity (one in the Senate, and one in the House), no legislator from my state of Tennessee had signed on to co-sponsor.

    So, during our meetings the next day, we pushed really hard, asking our legislators to support oral parity. And it worked! At the end of the day we received an email from a congressional staffer that said Congressmen Scott DesJarlais (TN-4) had just co-sponsored the bill in the House. When we heard the news, we all gave each other a congratulatory hug! Since then, we have learned that Congressman Marsha Blackburn (TN-7) also signed as a co-sponsor.

    That moment was just one highlight from a truly remarkable experience. Everyone on the Hill with us that day was proud to support Komen and eager to make an impact in the fight against breast cancer – from the Capitol police officers to the members of Congress.

    Personally, I felt welcomed and empowered to be surrounded by people who have such a passion and dedication to not only ending breast cancer, but also to improving the quality of life for the millions of people who have been affected by this disease.

    I just celebrated eight years cancer-free (also known as, my birthday) and I'm proud to say that what once made me uncomfortable now feels like a badge of honor. I will continue to do everything in my power to help eliminate breast cancer forever.

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