My Breasts, My Choices

My mother died of breast cancer, and my sister battled it. Here’s how I explored the risk factors and the mammogram controversy and then decided what to do

By: Dana Scarton

>> 66 Breast Cancer Specialists 

I arrive at the Lombardi Comprehensive Cancer Center at Georgetown University Hospital for what I call my marathon breast appointment. For the next two-plus hours at the Betty Lou Ourisman Breast Health Center, I’ll meet with a nurse practitioner, an oncologist, a mammogram technician, and a radiologist.

This is my second comprehensive-care appointment at Ourisman, which derives its name and considerable funding from Mandell Ourisman, president of the local Ourisman Automotive Group, in memory of his late wife, Betty Lou, who died in 1992 of breast cancer. The facility provides exams, imaging, and genetic services. It’s part of Lombardi, the only National Cancer Institute–designated comprehensive cancer center in the District.

I’d visited Ourisman over the years for routine mammograms. Then, 22 months ago at the urging of my gynecologist, I registered for the center’s comprehensive-care program. My doctor thought twice-yearly breast exams—one from her, one at Ourisman—would benefit someone like me. Someone at high risk for breast cancer.

My mother was diagnosed with the disease in 1974 at age 39. She died four years later. My younger sister developed a cancerous lump at 27. She underwent a mastectomy of the left breast followed by seven months of chemotherapy. Sixteen years later, she’s cancer-free and training to run her second marathon.

I’m 49, and my family history has been a hot topic with every doctor I’ve encountered since I was in my mid-thirties and had my first mammogram. After that initial screening, a radiologist nonchalantly suggested that if I wake up every day worrying about breast cancer, I might consider a prophylactic mastectomy, surgery in which both breasts are removed before any cancer develops.

I didn’t undergo a preemptive mastectomy, and I don’t wake with cancer worries. Still, I take my situation seriously. Having one “first degree” relative—sister, mother, or daughter—with breast cancer doubles a woman’s risk of getting the disease; having two increases the risk fivefold. On average, nearly 13 percent of females born today—one in eight—will be diagnosed with cancer of the breast during their lifetime, according to the NCI.

Assessing the Risks

I lie on an exam table as nurse practitioner Theresa Harrington Stukus uses the pads of her fingers to palpate each breast and armpit. The nonstop tapping reminds me of typing. I place my right arm above my head to spread the tissue as she examines my right breast; I do the same with my left arm when she moves to that side.

As she works, Stukus asks about my overall health and my sister’s post-cancer status. She has me sit up while she performs another palpation and listens to my heart and lungs. Then she steps back and studies the symmetry of my breasts as I raise both hands above my head and again as I lower them to my sides.

“We’re looking for redness, lumps, puckering, any irregularity,” she says.

The procedure, which lasts ten minutes, is similar to the exam a gynecologist provides. The difference is that the radiologists, oncologists, surgeons, and nurse practitioners at Ourisman specialize in breast care. The facility houses state-of-the-art equipment including high-resolution ultrasound and digital mammography; the computer images are thought to be more effective than regular film mammograms in analyzing dense breasts.

“The idea was to have all the diagnostic services a breast patient would need under one roof,” says Robert Warren, an oncologist and the center’s codirector.

On my last visit, Stukus circled areas of suspicion on both breasts with a pen—areas she especially wanted examined by the radiologist who would interpret my mammogram. I left looking like a human scratch pad. Today there are no marks.

“You didn’t draw on my breasts,” I say.

“I know!” she says with a laugh. “I didn’t find any lumps.”

The results are identical minutes later when Warren performs his own exam.

“Is it because my breasts are becoming less dense as I age?” I ask.

Warren shrugs, rubs his beard, and tells me my lump-free status could be due to any number of things, from the amount of caffeine I consumed to the phase of my menstrual cycle. “Maybe it’s just a good day,” he says.

A woman may note changes in her breasts throughout her life, according to the NCI. Many changes are due to hormones, such as when breasts feel lumpy or tender at different times during a woman’s cycle. Changes may also occur as a woman approaches menopause, during pregnancy, while breastfeeding, or when taking hormones such as the birth-control pill.

I take the pill to combat ovarian cysts. I’ve been on it for six years. Stukus suggests I stop the medicine next year, when I turn 50, the age most women enter menopause. If I don’t, she says, menopause may be unnaturally delayed and the estrogen in the pill may begin to act as a type of hormone-replacement therapy, which may increase my breast-cancer risk. I agree to her plan.

Having dense breast tissue or certain benign conditions such as complex fibroadenoma (noncancerous tumors) and atypical ductal hyperplasia (an accumulation of abnormal cells in a breast duct) can increase risk. So can having had previous chest radiation; starting menstruation before age 12 or entering menopause after 55; being obese after menopause; not having children or having them late in life; and having mutations to breast-cancer-susceptibility genes 1 or 2, known as BRCA1 and BRCA2.

My sister tested negative for both BRCA1 and BRCA2—which account for 5 to 10 percent of breast cancers—but it’s possible other genes linked to breast cancer exist and haven’t been discovered. Our mother died before genetic testing was available, but it’s unlikely she had the genes because women who do have them frequently develop cancer in both breasts. A woman who has inherited a mutation in BRCA1 or 2 is five times more likely to develop breast cancer, according to the NCI. She is also at increased risk for ovarian cancer.

Other factors are age and race. According to the American Cancer Society, one in eight invasive breast cancer cases is a woman younger than 45, while two out of three invasive breast cancers are found in women 55 and older. White women are slightly more likely to develop breast cancer than African-American women, but African-Americans are more likely to die of the disease. Reasons for this survival difference are unclear but, according to the American Society of Clinical Oncology, probably involve both socioeconomic and biological factors. Asian, Hispanic, and Native American women have a lower risk of both developing breast cancer and dying from it.

Women can assess their breast-cancer risk by using a simple risk calculator on the NCI Web site.

Getting a Mammogram

After handing me a prescription for a breast MRI, a screening recommended for women with dense breasts and a strong family history of breast cancer, Warren escorts me to a closet-size cubby off the main hallway. A handful of women sporting gowns like mine browse through magazines and wait to be called for their mammogram or to hear their results.

Within minutes, a technician named Janelle Eluwa ushers me into a dimly lit room with a computer and an imaging machine. She fastens a lead apron around my waist to shield my ovaries from radiation, then positions me against the machine, angling my feet, arms, and head to situate one breast on a chest-high ledge. With gloved hands, she tugs at my minuscule breast—apologizing all the while—until she gathers enough tissue to stuff between the ledge and a top plate, which she lowers until I’m firmly clamped into place.

“Okay, Ms. Scarton,” Eluwa says from a nearby glass booth. “Hold your breath, don’t breathe, don’t move.” The machine emits a beep as an image is taken and I think: Like there’s any way I could move or breathe with my boob in this vise! Within seconds, the beeping stops, the plates release me, and Eluwa’s voice oozes, “Relax, Ms. Scarton. Relax.”

I haven’t been adamant about scheduling annual mammograms. My last one was nearly two years ago. It’s not that I find the procedure painful. It’s the radiation that concerns me, even though I know it’s considered low level. Flying on a commercial jet from New York to California exposes a woman to the same amount, according to the American Cancer Society.

Mammography has been controversial for years, despite the fact that most experts insist that mammograms, although not perfect, are the best breast-cancer screening tool available and can detect tumors too small to be felt. The controversy heated up last November when the US Preventive Services Task Force recommended against routine mammograms for average-risk women, ages 40 through 49, and said women ages 50 to 74 should get screened every two years.

This contradicted longstanding advice of many doctors and health organizations. The American Cancer Society condemned the task-force recommendation and continues to urge women over 40 to get an annual mammogram—women at high risk may start earlier—as do the Ourisman providers and a multitude of others.

The National Breast Cancer Coalition, a Washington-based patient-advocacy group, commended the USPSTF recommendations, as did other cancer experts and women’s-health advocates. “We look very carefully at science and data and facts and try to stay away from emotion,” says NBCC president and breast-cancer survivor Fran Visco. “The task force does not say women should not get a mammogram ever again. I think it’s great to put that power in a woman’s hands.”

The task force said that although there is “convincing evidence” that mammography reduces breast-cancer mortality, the potential harm of having yearly mammograms starting at age 40 outweighs the benefit. Among the potential harms cited were false-positive results, which the panel noted are more common among women 40 to 49 than in older age groups and can lead to unnecessary biopsies.

The panel’s message seemed to be that risks and benefits should be assessed individually and that each woman should consult with her doctor to determine what’s in her best interest.

Debunking Myths

Besides controversy, misunderstandings about mammograms abound. Some women with breast implants, for instance, think they don’t need to undergo screenings. That’s not true, says Ted Gansler, director of medical content for the American Cancer Society. Women with implants can and should undergo breast exams and mammograms.

Other myths, sometimes propagated via mass e-mails, suggest that using antiperspirant or wearing a bra will give you breast cancer. Both claims are false, although antiperspirant can interfere with a mammogram, so it should be avoided on the day of the test.

Another controversy surrounds self breast exams. Once thought to be a necessity, these are now viewed as optional by many providers. If you want to perform a monthly check, speak with your doctor to make sure you know how to do it. If not, Gansler says, “just be aware of breast changes and get checked when you have a concern.”

The best ways to promote breast health, according to experts, are to maintain a healthy weight, particularly after menopause, exercise regularly, and consume no more than one alcoholic drink a day.

After undergoing four images, two of each breast, I return to the waiting area. During my previous visit, when my breasts were lumpy, my mammogram was followed by an ultrasound, which uses sound waves to create a picture of breast tissue. An ultrasound can help determine whether lumps are fluid-filled (cysts) or solid masses. My ultrasound at Ourisman, unlike ones I’ve had elsewhere, was performed by two radiologists rather than a technician. They gave me my verdict on the spot: benign cysts. This time, because my breast exam was so clean, I’m expecting an early dismissal with no ultrasound.

I’m half right. Eluwa summons me again. She points to a white smudge on the computerized representation of my left breast and takes two more images. A short time later, radiologist Scott Kuo explains that the smudge was an area of density; he needed to view it from additional perspectives and compare it with earlier results to make sure it was nothing new. It wasn’t, he tells me. No need for an ultrasound.

“See you next year,” he says.

The Future: Decisions

I breathe a sigh of relief that the appointment is over and the outcome is good. Yet I have decisions to make.

There’s the MRI order, which for the moment I stuff into my purse. The thought of lying inside a noisy tube with my breasts suspended into cones doesn’t thrill me. Nor does the fact that the test generates more false positives than do mammograms. This isn’t to say I’m not persuadable. Both Warren and Stukus say they’re available to discuss this matter further, and I’ll likely take them up on their offers.

There’s also the question of whether to take a drug that’s been approved to lower the chance of breast cancer in women with an increased risk. One drug is tamoxifen, which is also given to women who have had cancer; my sister took it for five years to reduce her risk of recurrence. It appears to have been a good move for her, but I doubt I’ll take it. I worry about possible side effects—blood clots, stroke, uterine cancer, cataracts—even though the Breast Cancer Prevention Trial, a study funded by the NCI, found a reduction in invasive breast cancer in high-risk women who took tamoxifen for five years.

Warren said I could wait until winter to have the MRI, which gives me a chance to discuss it with my gynecologist, too. Usually, my gynecologist and my breast-care providers agree, but not always. The Ourisman team, for instance, has placed a higher priority on getting me off of the birth-control pill.

What’s clear is that all of my practitioners have my best interest in mind. It’s also clear that while the science has advanced a lot since my mother’s diagnosis, and even my sister’s, it’s not yet exact.

“We have no guarantee tamoxifen will prevent you from developing breast cancer,” Warren says. “What we can say is that it reduces your risk. The reason we don’t insist on it is that we’re not the ones who are going to be experiencing the side effects, and they’re not trivial, although thankfully they’re rare. We try to give you the best information we can so you can make an informed decision.”

I like my doctor’s approach. It tells me he understands the challenging decisions facing women at an elevated risk for breast cancer. It also tells me he’s open to hearing me express hesitancy over a recommended procedure. I tend to side with experts such as breast surgeon Susan Love, who has cautioned against overscreening and overtreatment. For me, the stress associated with unnecessary procedures seems as significant a health concern as any.

In the end, each person has to be comfortable with her decisions and confident that she has a skilled and supportive team behind her. On this last point, I feel very good.

This article first appeared in the October 2010 issue of The Washingtonian.