In 2005, my boyfriend discovered a lump on my breast. I went in to have it checked out and the doctor recommended a biopsy. The lump turned out to be benign fatty tissue, but the sample revealed that I had lobular carcinoma in situ (LCIS), the presence of abnormal cells in my breast lobules. At the time it was also called stage 0 breast cancer, and I was assured that it was not cancer but rather an early indicator for developing it later. The doctor suggested I start taking Tamoxifen [a drug recommended to reduce breast cancer risk in pre- and perimenopausal women by blocking the effects of estrogen in breast tissue] as a preventative measure—a recommendation I declined to follow because I read that the medication could interfere with my having children. I discussed the diagnosis with my mother and sister, but we treated it as a curiosity and moved on.
RELATED: 20 Things to Know About DCIS, or 'Stage 0' Breast Cancer
Elijah, my beloved husband of 12 years and best friend for 20, had been privately battling a rare form of cancer for more than 25 years.
Things took a turn for the worse in the summer of 2019. Even as his own health was rapidly deteriorating, he took the time to urge me to undergo a preventative double mastectomy, saying, "Maya, you are always taking care of other people. It's time to put yourself first."
My husband died not too long after I scheduled my surgery. I was devastated and numb. After the burial, I went on autopilot and turned to what lay ahead in my immediate future: Would I run for Elijah's seat in Congress, and, if so, should I be fully transparent about my planned surgery, or should I keep it a secret? Driven by what had been our shared passion for public service (Elijah and I met on Capitol Hill, where I once worked as a congressional staffer for a House committee and other members of Congress), I made the decision to run for his seat. Several people suggested that I reschedule the surgery for after the campaign. But I resisted that advice for three reasons: to keep my promise to Elijah to prioritize my health; to avoid the same struggles he faced to keep his own health battles secret, ultimately dying without the benefit of giving everyone who loved him a chance to say their goodbyes; and to avoid having the surgery news leaked through the media and losing the public's trust. Full transparency was the only way to go.
RELATED: Shannen Doherty Shares 'Truthful' Photos From Her Personal Journey With Breast Cancer on Instagram
The Right Decision
I made a double announcement about my campaign launch and scheduled procedure on MSNBC's Rachel Maddow Show. Shortly thereafter, I went into the hospital for the operation. Meredith, a Johns Hopkins– and Harvard-trained anesthesiologist, flew in to help oversee my surgical prep and recovery. Thanks to my sister's expert guidance—which minimized my postsurgical pain—and the talented health care professionals at Johns Hopkins hospital, the procedure was a success.
The week after, Meredith and I met with one of the surgeons to go over the pathology report analyzing my breast tissue. My sister scanned the report as the doctor explained the results and said loudly, "Hallelujah!" I didn't understand the medical terminology, but it turned out that the report showed my cells were in the process of changing. I wouldn't have an appreciation for what this meant for several more months.
Although I was back out on the campaign trail two and a half weeks after the surgery, I lost the special election for my late husband's seat
in February 2020. And just a few weeks later, the world stopped because of a novel coronavirus. If I had delayed the elective procedure, it would have likely been postponed indefinitely due to the demands that COVID patients placed on most hospitals then. The pathology report underscored that if I had waited any longer, I would have gotten breast cancer.
RELATED: 7 Breast Cancer Charities to Consider When Making Charitable Donations
If there's anything my family's story has taught me, it's that there are still so many unresolved questions in health care about breast cancer diagnosis.
Although there is clearly a genetic factor linking our cases, neither my mother, my sister, nor I tested positive for the BRCA gene. And contrary to the studies that suggest Black women are more likely to be diagnosed with breast cancer at later stages because they lack access to health care, my mother had uninterrupted access her entire adult life. But the tissue in her breasts was very dense, in line with research that shows Black women tend to have denser breast tissue, making it more difficult to detect abnormalities through a traditional mammogram.
Until the health care industry prioritizes imaging and genetic testing beyond mammograms and BRCA that apply to more and diverse women, these disparities will continue to negatively impact hundreds and thousands of breast cancer patients.
My advice to other women who are concerned about their breast health? First, self-care matters. Incorporate lifestyle changes, such as exercise, healthy eating, meditation, and regular and annual exams, to help reduce possible risk. Second, get to know your family health history by asking your relatives to share what conditions they and other family members have experienced, so that you can be on the lookout for possible medical minefields. Third, become an advocate. Call on Congress to increase breast cancer research funding for the National Institutes of Health and help raise funds for organizations such as the Breast Cancer Research Foundation and the Black Women's Health Imperative. My hope is that if we maintain efforts to align systems, procedures, and diagnostic tools with the needs of all women, we can prevent, treat, and beat the scourge of breast cancer.
Maya Rockeymoore Cummings, PhD, is a writer, speaker, consultant, and strategist. She is the author of the forthcoming book Rageism: Identity, Inequality and the Quest for Liberation Policy (Routledge).
This article originally appeared in the October 2021 issue of Health Magazine. Click here to subscribe today!
To get our top stories delivered to your inbox, sign up for the Healthy Living newsletter