by Zahra Khan, California Health Report
January 14, 2020
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.
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.
This article first appeared on California Health Report and is republished here under a Creative Commons license.
SOURCE: Zahra Khan
VIA: calhealthreport.org
MAIN IMAGE SOURCE: iStock
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