One woman's quest to navigate the tangled world of mammography

Dr. Mitva Patel is silhouetted by X-ray images of breasts on computer screens behind her as she asks me the million-dollar question: “What's preventing you from getting your annual mammogram?”

Patel, a breast radiologist with Ohio State's cancer program, sits across from me in her office, her ID hanging from her neck on a pink ribbon lanyard, that ubiquitous symbol of breast cancer awareness. Mammography has long been considered a key tool in defeating the disease, but the decision about what age to begin screening has become complicated by new guidelines and the corresponding public debate. I've come to the Stefanie Spielman Comprehensive Breast Center seeking more information, but I'm still processing the question. Am I afraid of the illness, or the overtreatment that can accompany some uncertain diagnoses? Or am I afraid of something else entirely?

I grew up paying special attention to my family's history of cancer. My grandfather died of prostate cancer. My grandmother succumbed to leukemia. Their daughter, my aunt, fought three separate cancerous battles in her breast, thyroid and lung. I vaguely recall conversations about other relatives with cervical or breast cancer.

So when I had difficulty swallowing, which I remembered as one of the “seven signs of cancer,” I visited an otolaryngologist—a physician of the ear, nose and throat—with my family history and an obsessive journal of symptoms in tow. The condition was benign, probably brought on by stress, but it took me a while to admit that, even after several negative test results. Eventually, I critically examined my health history in terms of lifestyle rather than simply through the lens of genetics.

My aunt had taken hormones to prevent miscarriage, predisposing her to several cancers. She and my grandmother also were exposed to their husbands' secondhand smoke. Others with cancer were distant relatives or quite elderly. Maybe I was not as high-risk as I thought.

As I approached my 40s, I felt no particular need for a mammogram, emboldened last year when the American Cancer Society changed its mammography guidelines, recommending women start at age 45 rather than 40. However, my social media feed was filled with sponsored links asking for a repeal of that decision. Angry women bashed insurance companies, posted personal cancer stories and punctuated everything with the hashtag “early detection saves lives.”

After the ACS announced its new guidelines, I searched the web for the studies that prompted the decision, finding some that called for caution regarding the change while another prominent but controversial study cast doubt on the value of early screenings. If early detection didn't necessarily save lives, I worried about the potential for unnecessary tests, or worse, unnecessary treatment.

So whose advice should I take? The ACS? The women who testified online that they owed their lives to early testing? The Centers for Disease Control and Prevention website lists the mammography guidelines of seven health organizations, each with varying recommendations.

Patel says that internet research can be helpful, but only to an extent. “It's nice for patients to have information available, but it's really confusing,” she says. “Trying to pick apart some of these scientific studies is really difficult for a lay person.”

Her philosophy is simple: If a mass isn't found, it cannot be treated. Along with the American College of Radiology, she supports annual mammograms for women of average risk starting at 40.

Few doubt the benefits of mammography for older women; much of the debate focuses on those in their 40s, when their chances of developing the disease jump from one in 300 to one in 70. But women's breast tissue tends to be denser in their 40s than when they're older, making mammogram images more difficult to read. “Those women who are dense and young, they get hit twice,” Patel says. “It's easier to miss [a cancer], and they have more tissue, so their likelihood of getting cancer could be higher, too.” She adds that cancers in younger women tend to be more aggressive, increasing the value of early detection.

Yet mammography can lead to false positive results or callbacks for additional images, often prompting stress and extra testing, including biopsies. Patel tells me about tomosynthesis, an innovative type of 3-D screening that should allow better imaging of dense breast tissue with fewer false positives and fewer women being called back. It should be available through OSU imaging centers within a year, but for now patients still rely on traditional methods, like mammography, breast ultrasounds or MRIs.

One of my concerns is that the more my breasts are imaged, the more opportunities arise for something uncertain to be found—primarily ductal carcinoma in situ, or DCIS. My aunt's breast cancer biopsy diagnosed DCIS.

Sometimes called Stage 0 breast cancer, DCIS is a growth of abnormal cells in a milk duct, explains Dr. Doreen Agnese, a surgical oncologist with OSU's Comprehensive Cancer Center. At its outset, it's noninvasive and nonlethal. The ACS estimates that 60,290 new cases of DCIS were diagnosed in 2015, along with 231,840 invasive breast cancer cases. Agnese says the medical literature suggest that, left untreated, perhaps 15-50 percent of DCIS cases would eventually progress to invasive cancers, while the remainder wouldn't affect a woman's health. It can't be determined which cases are problematic at this point; therefore, DCIS is usually treated aggressively, just like invasive cancers. It's an example of acknowledged overtreatment, yet doctors are hesitant to do less without more information, leaving patients to weigh the probabilities.

“No one wants to be the physician who says, ‘Hey, this is just DCIS. Let's not do anything,' and then have someone develop metastatic breast cancer, which you can't fix,” Agnese says.

Breast cancer is lethal only after it metastasizes, or spreads to other parts of the body. Agnese tells me that every invasive cancer cell has metastatic potential, so if cells become large enough and gain access to the lymphatic system or the bloodstream, they can make a fatal leap to other organs. “That's what we're trying to minimize, the amount of cells that can get into the bloodstream,” Agnese continues. “So if we find a smaller tumor without invasion, then we potentially can cure it with surgery and other therapies.”

The overall takeaway is that my chances are generally better if I'm diagnosed with a smaller tumor, early in its development. Despite the risks of false positives and overtreatment, the best case for survival points to starting annual mammograms when my odds go up, at 40. It makes sense.

So why have I resisted? Suddenly I realize that part of the answer is hanging around Patel's neck—the pink ribbon lanyard. Originally stigmatized, breast cancer patients benefited from increased public attention gained through advocacy organizations' pink ribbon campaigns, and subsequent improved treatment. But the ribbon's prominence has gone beyond awareness; it's a branding tool—an opportunity for organizations to project good intentions and values. The Breast Cancer Action watchdog group runs the Think Before You Pink project, which calls into question the motives of certain campaigns. Some are absurd, like pink fracking drill bits, while others stoop to the level of what the BCA calls “pinkwashing”—selling products linked to the disease itself. Several vodka brands have adorned their bottles with pink ribbons, despite the fact that alcohol consumption can increase the risk of breast cancer.

Cause-related marketing has blurred the lines between those whose primary interest is profit and those concerned for my health, making me suspicious of health advice dispensed with pink ribbons. But Patel, her accessories aside, is clearly in the latter group. Her main argument for mammography is her own medical decision, informed by her professional expertise. “I'm screening myself every year because I know it's important,” says the 42-year-old Patel.

Preventative medicine and awareness are generally good things. But at what point does awareness spark fear? And when does fear result in less intelligent health care decisions? Following her breast biopsy and diagnosis, my aunt chose to forego a unilateral mastectomy in favor of a bilateral procedure, as many women do, despite the lack of evidence that such treatment results in better outcomes.

“That's something I spend a lot of time trying to tell people ... you're not more likely to survive cancer based on removing additional body parts,” Agnese says. “I think women are scared, and because they're scared they think doing more will help them.”

I think about my aunt, surrendering both breasts, her thyroid gland and part of her right lung to eradicate cancer in her body. Those sacrifices, along with testing and treatment, were never enough to give her true peace of mind. She died of suicide, leaving behind a letter detailing her fear that cancer had returned once again, although no malignancies were found in her body after her death.

According to the CDC, suicide quietly claimed 41,149 lives in 2013, nearly as many as the 41,324 lost to breast cancer that same year. Yet there's no familiar rallying symbol for suicide. Has buying pink jewelry and donning pink clothes caused us to overestimate the prevalence or lethality of breast cancer compared to other health concerns? And is this hypervigilance what I think I am resisting by delaying mammography?

“There's a lot of fear out there,” confirms Agnese, a cancer survivor herself. In 2010 she found a lump in her neck—a papillary thyroid cancer. Despite being a physician, she finds the specter of cancer as stressful as anyone else. “I still wonder, is something going to pop up?”

Her response is to educate her patients and monitor her own health as best she can, proving to me it's possible to be touched by cancer but not ruled by it. My obsessions with my family history and my swallowing symptoms ultimately didn't improve my health, but my pushback against mammography in a pink-festooned society may have oversimplified matters of risk in ways that weren't beneficial either. Health care decisions, I determined, are a matter of risk management and risk tolerance.

I won't stop gathering information and questioning accepted practices—it's not in my nature. But I will get a mammogram.