When cancer-screening fears are all too real

By Sara Austin

updated 2:47 p.m. ET Jan. 19, 2009

I am sitting in a tiny changing room at a mammography center, shirtless, and I am crying. No reason to, logically: I haven’t even taken my test yet. Nor have I found a lump. At 35 years old, I know there’s little chance this screening will tell me I’m anything but perfectly healthy. “It’s a simple baseline mammogram, recommended for women with a family history of breast cancer,” my doctor had told me at a checkup, scribbling a referral to a radiology practice near my home in New York City.

When you’ve nursed someone you love through cancer, though, there’s no such thing as a simple screening. And when that person shared your genes, it’s doubly fraught. I pull a dusty-pink hospital gown from a pile in the changing room, wipe my tears on the sleeve and wonder, How many times did my mother go through this routine? And what did it feel like when it went wrong? I can’t imagine what ran through her mind between the appointment in July 1996 when the doctors found her cancer and the moment when she gathered my sister and me on the living room sofa, both of us in our 20s, and grasped our hands tightly. “I have bad, bad breast cancer,” she said, her voice breaking. She died a mere 13 months later, after being diagnosed with inflammatory breast cancer, a rare and virulent form of the disease. She was three weeks from her 58th birthday.

My confession today is that it has taken me nearly two years from the time my doctor recommended a mammogram for me to actually get one. I delayed making an appointment for more than a year, the prescription sitting in a stack of junk mail. Months later, I arrived for the visit and discovered I had left the prescription at home. While I pondered my missing paperwork, an older woman next to me beseeched the desk clerk to check the book again for her apparently missing appointment. I quickly offered her my slot and scheduled another one five months down the road.

Now my reprieve is over.

I am well insured, well informed — I oversee the health coverage at SELF — and well aware of the lifesaving difference early detection can make. The only thing standing in my way has been a mix of scary emotions: fear of a poor result, denial of my above-average risk, dread of having to talk with strangers about what happened to my mother, sadness to be walking in her footsteps. It’s a toxic cocktail that has brought on my paralysis.

No good time to put off screening
For many women, a little anxiety is a helpful kick in the pants. Numerous studies show that the greater a woman’s perceived risk for breast, cervical and other cancers, the more likely she is to get tested for them. Some research, however, suggests that those who are most fearful may actually be the least likely to get screened, according to experts at the Fred Hutchinson Cancer Research Center in Seattle. You already know which camp I fall into. And there are a lot of us: women who by all rights should know better. According to a 2007 Harris Interactive survey for the American College of Obstetricians and Gynecologists in Washington, D.C., one in five American women does not want to know if she has cancer. The number was a notch higher for those who had a family history. “For a subset of women, the fear is real and intense, and it can be disabling,” says psychiatrist Mary Jane Massie, M.D., director of the Barbara White Fishman Center for Psychological Counseling at Memorial Sloan-Kettering Breast Center in New York City. Physicians say younger women whose doctors recommend an early cancer screening may be more likely to fall into that anxious group because tests such as mammograms and colonoscopies are not yet a routine part of their medical care.

Quiz Are you at risk for breast cancer? Take our quiz msnbc.com

During the years I avoided my mammogram, I thought of my relative youth as a license to stall — growing older, I rationalized, is the highest risk factor for breast cancer. But because younger women often have faster growing, more aggressive tumors, early detection is critical for them. “If you are going to put off getting screened, when you are younger is certainly not the time to do it,” notes Mary Mahoney, M.D., director of breast imaging at the University of Cincinnati.

There is in fact no good time to put it off. Cancer caught through routine screenings tends to be at an earlier, highly treatable stage. When breast and skin cancers are found early, five-year survival rates reach 98 percent, reports the American Cancer Society in Atlanta. If the cancer has had time to spread to nearby organs or lymph nodes, however, the survival rate drops to 84 percent for breast tumors and to 65 percent for melanoma. “The type of patient that worries me is the one who knows she has cancer but sits at home until she has advanced disease,” Dr. Massie says. “It is a tragedy, and we certainly have seen women who very much know what’s happening in their body and can’t force themselves to get checked.”

More sophisticated tests and early-detection campaigns have helped increase screening rates and saved lives. Yet these developments also might give women the willies. “We are aware of breast cancer, and that’s great,” says Elizabeth A. Poynor, M.D., a gynecologic oncologist in New York City. “But because we hear about breast cancer daily, some women feel they are just waiting to get it.” Meanwhile, the move to digital mammography from film machines has created an adjustment period for radiologists and patients. “The resolution is so improved that we’re picking up more,” Dr. Mahoney says. Yes, tumors are being detected earlier, but more women with healthy breasts are also enduring nerve-racking follow-up tests.

Other patients, particularly those at high risk and those with younger, denser breast tissue, may be asked to undergo additional ultrasound or MRI screenings even if their mammograms are clean. And any time a woman gets a call to return to the doctor, alarm bells ring. “We can tell women that the vast majority of these [callbacks] turn out not to be anything of real importance,” Dr. Mahoney says. “That’s all well and good until it’s you. Women are understandably concerned because they know so much and know what the possibilities are.”

Genetic testing has added another layer of anxiety. A test for gene mutations linked to breast cancer is even more distressing than a mammogram. A negative result, which indicates you do not carry the mutation, doesn’t put you in the clear, and a positive result could mean a lifetime spent wondering if this is the day that turns into the worst day of your life. “Some women have significant anxiety from that, and if somebody is not going to act on the results, and if her quality of life is affected, then she shouldn’t undergo testing,” Dr. Poynor says.

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