Beyond Mammograms: The Quest for Early Detection and Equal Healthcare

In August 2015, I received my mammogram results. I was relieved to read “dense breasts” and not “suspicious findings.” Tossing the results aside, I went on with my day and life. Little did I know that five months later, during a routine self-exam, I would discover a suspicious, fingerling potato-sized welt under my right breast. What I wasn’t told regarding my mammography results was that dense breasts increase the risk of breast cancer diagnosis twofold. Five months had gone by while the cancer grew unabated to stage 2B.  

Why was I kept in the dark about the significance of dense breasts? Why weren’t preventive healthcare measures offered to ensure early detection and avoid a devastating diagnosis? Unfortunately, this lack of awareness isn’t uncommon.

The degree of density was never disclosed to me nor that dense breasts could obscure breast cancer. The degree serves as a weather forecast, offering insights into the condition of our breasts. Picture a plane representing a potential tumor in the sky. On a sunny day, the plane stands out distinctly, just like a detectable tumor. On a partly cloudy day, most of the plane or tumor is visible, though not as clear. However, on a cloudy day, you sense the presence of an object, but it remains vague and suspicious. Similarly, highly dense breast tissue is akin to a mostly cloudy or overcast day, where nothing is discernible except for the density itself.

Women with dense breasts are at an increased risk for a breast cancer diagnosis and are more likely to have a false negative mammogram; something could be lurking, but the radiologist reading a mammogram can’t always tell. In those cases, you should ask your doctor for an additional screening study with more sophisticated imaging — an MRI and/or an ultrasound. 

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In spite of being a healthcare executive for over a decade, I, like most Black women, did not have additional screenings, which could have meant an earlier diagnosis and curative treatment instead of what turned out to be an aggressive HER2+ breast cancer that ultimately metastasized to my brain.

That is my story. That is unacceptable. Black women refuse to be invisible in the conversation about our own health, and it’s beyond time for us to be provided with better, more appropriate care.

RELATED: What Are ‘Dense’ Breasts & Why Are They Increasing Your Risk For Breast Cancer?

While the overall U.S. breast cancer mortality rate has decreased by 46 percent since the 1990s, the decline for Black women is a dismal 26 percent. Women with dense breasts experience higher rates of interval cancers that emerge within a year of a normal mammogram. In 2019, 38 states mandated patient notification of breast density. But unfortunately, my state was not among them. This raises a pertinent question: why are Black women less likely to be referred for supplemental breast screening despite the lack of racial variation in breast density?

According to a 2020 study, “Minority women with dense breasts are less likely to be ordered supplemental breast imaging. Further research should investigate physician and patient behaviors to determine barriers in supplemental imaging. Understanding these differences may help reduce disparities in breast cancer care and mortality.” 

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Throughout my journey, I’ve found strength through community support. We are working together to educate Black women on what to do if their mammogram results say dense breasts:

1. Have a baseline risk assessment performed by your doctor, by age 25, to determine if screening earlier than age 40 is needed. New American College of Radiology guidelines call for earlier and more intensive screening for high-risk women, “particularly Black and Ashkenazi Jewish women.” Black women are considered high risk, without exception, due to higher mortality from breast cancer, higher grade tumors, and higher risk of BRCA1 and BRCA2 genetic mutations, amongst other factors.  
2. Make sure your mammogram is a DBT type (Digital Breast Tomosynthesis). This is also referred to as a 3D mammogram. 
3. Talk to your doctor about your mammogram results including the level of your breast density (heterogeneous or extremely dense). Mammography remains a critical necessity for good breast health. Get screened at a frequency and age according to your own risk factors. Starting at age 25-30, ask your doctor if you’re at high risk for breast cancer. In July 2021, the American College of Radiology reclassified Black women as high-risk.
4. Document your biological family health history and share it with your doctor(s). As a Black woman, a family history of breast, prostate, pancreatic, and ovarian cancers on your mother’s and father’s side of the family can increase your risks. The more your biological family history is documented (it is optimal to know the condition and age, if possible), the more your screening can be closely monitored, perhaps at an earlier age than the average, and the more likely your insurance will cover additional screenings.
5. Understand the laws in your state regarding insurance coverage for additional screenings and the disclosure of the level of density. Maryland, for example, passed two bills covering genetic and genomic testing and coverage for additional screenings at no cost. I proudly testified for both bills and met with my state legislators. You should too. To register to be trained on using your voice for these changes, contact my breast health equity organization Touch4Life to join our B-HAVE™ (Breast-Health Advocate Voices for Equity) initiative. By September 2024, the FDA will require breast density notification for all women in the U.S.
6. Perform self-exams of your breasts regularly. If menstruating, remember to do so when you put away your cycle gear (tampons, pads, etc.) after your period. If you are post- or perimenopausal, pick a day of the month (e.g., your birth date) and go for it!  Look and feel your breasts. If you want to see how to perform a self-breast exam, you can view a nurse practitioner as she walks you through the process.

Black women have been neglected for far too long under the weight of healthcare disparities. The healthcare industry must recognize our unique risks and vulnerabilities, offering us the same attention and care given to others. It’s time to come together, share our stories, and demand a brighter, healthier future for all Black women. Let us refuse to be invisible any longer and take the steps necessary to reclaim our health because our lives truly matter.

Touch4Life is a 501(c)(3) nonprofit organization dedicated to promoting breast health equity. Our mission is rooted in the experiences of Laura Crandon who is a Black breast cancer survivor, driving us to educate, engage, and empower individuals within the community to actively prioritize and embrace lifelong breast health.