Opinion: New Mammogram Guidelines Are Racially Unjust

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My story is not one of a breast cancer survivor but of a breast cancer dodger, who got caught at a critical pre-cancer stage 0. My pre-cancer was diagnosed because I ignored United States Preventive Services Task Force guidelines and insisted on an annual mammogram. In the process, I gained invaluable perspectives and have since been urging my peers, especially people of color who think they are safe, to go for their mammograms annually in their forties.

In my case, I already had a clear mammogram the prior year. So, as someone in the 40-45 age bracket who was not considered high-risk based on family history and genetics, I was not otherwise planning to get another mammogram until age 50, per the new guidelines.

Indeed, extensive genetic testing would later show that my genes were completely normal for not only the two commonly evaluated BRCA1 and BRCA2 genes, but also the remaining 28 genes I had tested. Even secondary factors, like having children at a young age, great health, a lightweight build, an active lifestyle and clear monthly self-exams placed me squarely in the “not-high-risk” category.

So, what was missing in these new U.S. Task Force guidelines, designed to spare test-anxiety by changing mammogram frequency from annually at age 40 to biennially at age 50? Plenty. For a nation in which people of color have suffered through historically racist experiments like the Tuskegee study, and have continued to face disparities in health care systems, the guidelines negligently overlook well-known race factors. A major study by Harvard researchers emphasizes that for breast cancer diagnoses, “white patients peak in their 60s, whereas nonwhite patients peak in their 40s,” often with a more advanced stage disease.

 Zahra Khan with her family on a trip to Hawaii in December 2018. The trip was a way for the family to move on from the events earlier in the year, when Khan was diagnosed with pre-breast cancer. Khan and her husband, Nazer Qureshi, stand with their daughters, Summer (on left) and Hanya.

Like any reasonable woman, I too dislike the anxiety of “passing” clinical exams, but allowing the U.S. Task Force to reduce my worth to pacified ignorance is dangerous. Could changes in breast tissue really occur in just one year for someone not high-risk?

After an unsettling dream, I requested my primary-care physician to pay specific attention to my left side during my annual physical. Like myself, she felt nothing. Upon explaining that I did not need a mammogram based on current guidelines, she still deferred to my wish for a 3D mammogram, which produces better detection in dense breast tissue present in 40 percent of women, particularly slim ones like myself who have not gone through menopause.

My results rattled me: two questionable findings on my left side, with spot No. 2 showing a microscopic “scratch,” termed a micro-calcification. The areas of concern were so small that there was no lump. In fact, no surgeon, radiologist or other physician could ever feel a lump, despite my petite build. This is when I really began understanding the value of early detection through annual screening. Upon a thorough comparison with the previous year’s mammogram, the radiologist concluded that the findings were definitely a new development.

Suddenly, I was a case in point for why the American College of Radiology, the American Society of Breast Surgeons, the National Consortium of Breast Centers, and leading cancer institutions like MD Anderson and Memorial Sloan Kettering, all urge annual mammograms in the forties, in fierce opposition to delayed U.S. Task Force guidelines. Tissue changes can often occur in just one year.

My anxiety skyrocketed as I verified through needle biopsies whether the spots found were problematic. Spot 1 was benign. But spot No. 2 was an early stage 0 ductal carcinoma in situ, termed a pre-cancer finding. This stage is serious, but not classified as cancer because the abnormal pre-cancer cells have no developmental capacity to move or invade any other place—yet. The timing of this catch was crucial.

Stunned, I realized that the “25 percent of all breast cancers occur in high-risk women” statistic is so over-advertised that even a numbers-oriented person like myself had not processed this fact in its jarring flipped version: 75 percent of breast cancers occur in women who have no family history and are not high-risk.

In America, breast cancer is the second leading cause for female cancer deaths; 1 in 8 women becomes afflicted in her lifetime. Shockingly, 1 in 6 breast cancers occur in the forties. However, these published statistics are all for cancer (stages 1-4). So, it is paramount to understand that these numbers do not reflect a key underlying, preventive opportunity a mammogram may also provide: discovering an issue at stage 0, pre-cancer.

As a young South-Asian mom in her 40s, I had every desire to live optimally for my close-knit family, have a career and be an active member of society without the constant cloud of cancer (stages 1-4). At stage 0, I had very different treatment options at my disposal. In the end, I pursued a route that included no radiation, no chemotherapy, no oncology, no daily drugs for years and virtually no risk of recurrence: a bilateral mastectomy with simultaneous reconstruction.

This major procedure (unlike harsher mastectomies at later stages) offered me the greatest peace of mind to eliminate disease permanently with an added bonus of no disfigurement; discrete incisions in non-visible areas allowed access under the skin to remove all breast tissue for subsequent replacement with fat/implants. In that latter sense, I comforted myself by mentally rebranding the terrifying word “mastectomy” to “cosmetic-surgery,” something undertaken by millions of women. The critical difference between us is that my entire tissue removed got fully evaluated by pathology for even smaller abnormalities that might still be too tiny to detect by mammography. In my case no such area was found.

I still shudder at “what-if” I had waited until age 50 for my next mammogram, let alone another year. In the 40s, annual imaging is best as recommended by major surgery, radiology and cancer treatment institutions.

While breast cancer diagnosis for whites spikes in the 60s, a significant 23 percent are still diagnosed under age 50. Furthermore, the ‘start at 50’ U.S. Task Force mammogram approach particularly cheats Asian, Hispanic and black women, whose diagnoses peak in the 40s, potentially creating the greatest suffering for people of color at a relatively younger age.

Having averted this crisis, my journey highlights the need for racial justice in annual mammograms and the value of being caught at pre-cancer stage 0: an opportunity to become a breast cancer “dodger” rather than a breast cancer survivor.

Zahra Khan, who holds a master’s degree in public administration from Harvard University and is a member of the American Institute of Certified Public Accountants, advocates for health equity for women of color. 

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