Can You Trust Your Mammogram?

Can You Trust Your Mammogram?

WebMD Feature from "Good Housekeeping" MagazineBy Fran Smith

Why even smart doctors miss breast cancer - and how to make sure you're getting the best care.
No matter what you know about other diseases, breast cancer is probably the one that scares you most. It is frightening, striking nearly 182,000 women this year and plunging them into a world of complicated, arduous treatment. So it's heartening to know that more women are being diagnosed early, when the odds of beating the cancer are as high as 98 percent. Prevention and treatment are becoming personalized, thanks to genetic tests and new types of drugs. And after decades of no change, the death rate has finally begun to drop — about 2 percent annually since 1990.

Yet behind these impressive statistics lies one dumbfoundingly scary fact: Just because better tools and treatment exist is no guarantee that you'll get any of them. Your mammogram could be interpreted inaccurately, a lump could be incorrectly diagnosed, and you may not receive the best treatment for you simply because of where you live, the type of surgeon you choose — or even the doctor's sex.

That's why it's more important than ever to know the right questions to ask. Breast cancer is a complex disease (some researchers suspect it's at least five genetically distinct conditions), and no single approach works best for everybody. At every step — when you have your annual mammogram or get a suspicious lump checked out or undergo treatment — you should, at the very least, receive care that meets the scientific guidelines issued by leading cancer organizations. Here's how to make sure you do.

Screening Snafus
When you get a mammogram, it's common to have a stab of anxiety about what the radiologist will find. What should also concern you: the doctor who's doing the detecting.

The news: In a new study, researchers reviewed nearly half a million mammograms performed at 44 facilities. At the best centers, doctors identified cancer when it was present just about 100% of the time; at others, that number was closer to 70%, says study leader Stephen Taplin, M.D., M.P.H., a senior scientist at the National Cancer Institute. Facilities with a breast-imaging specialist (defined here as a doctor who spends at least half her time reading mammograms) had the best record.

Why it matters: Getting a regular mammogram is key to finding breast cancer early. Five-year survival rates drop from a high of 98.1% for early, breast-only tumors to 27.1% for advanced cancer that has spread to distant organs.

What you should do: When you call for an appointment, ask if there's a breast-imaging specialist on staff. If not, shop around, advises Diana Miglioretti, Ph.D., a researcher with the Group Health Center for Health Studies in Seattle. "I'd go to someone who has been interpreting screening mammograms for at least 10 years."

Follow-up Foul-ups
If your screening mammogram is abnormal or you have a lump, the next step is often a diagnostic X-ray, which takes magnified close-ups of the suspicious tissue.

The news: In theory, diagnostic mammograms should be easier to interpret than screening ones because the doctor knows where trouble may be lurking. Yet the largest study analyzing how well radiologists do on these critical exams found they missed 21 percent of cancers on average. The real shocker was the range: The top performer found every tumor, while the worst missed an astonishing 73 percent. Doctors affiliated with academic medical centers did best: They correctly diagnosed 88 percent of cancers.

Why it matters: Missing a tumor at this step could mean a delay in diagnosis — possibly a dangerous one, if a tumor isn't detected and treated before the cancer has spread.

What you should do: As with screening X-rays, the doctor who reads your diagnostic X-ray should be someone who specializes in mammograms, says Miglioretti, who led the study. Unless you live in a rural area, you should be able to find such a specialist no more than an hour or two away. "It's worth the drive," she says.

Surgical Biases
The biggest decision many women face when they're diagnosed with breast cancer is whether to have a mastectomy (removal of the entire breast) or a lumpectomy (only the tumor and surrounding tissue are cut out). In many cases, breast-conserving surgery, including lymph node testing and follow-up radiation, has the same lifesaving benefits as mastectomy. Yet your surgeon may not explain the options and consequences clearly or evenhandedly.

The news: Clinical guidelines developed by leading organizations favor breast-conserving surgery because it's less drastic. That's true whether you live in Augusta, ME, or Augusta, GA. Yet a review of 800,000 patient records found that while 70% in the Northeast had breast-sparing surgery, only 58% of those in the South did (the numbers for the West and Midwest were 63 percent and 61 percent, respectively). The review didn't look for a why, but study leader Jack Sariego, M.D., professor of surgery at Temple University, notes that the more rural South likely has fewer radiation facilities and fewer academic medical centers to promote surgical advances.

Beyond your zip code, the type of surgeon and hospital you choose may affect the recommendation you'll receive. Doctors who treat a lot of breast cancer or who work in cancer centers or academic medical centers suggest lumpectomy more often than general surgeons in the community. Surgeons trained after 1981 are also more likely to recommend a lumpectomy than older doctors, past research from the University of North Carolina at Chapel Hill has shown.
Why it matters: In a survey of 1,132 women who had either a lumpectomy or a mastectomy, almost half indicated they did not understand the risks and benefits of their choice.
What you should do: Ask loads of questions, starting with, "Am I a candidate for breast-conserving surgery, and if not, why not?" advises Dr. Sariego. Do your own research. And don't be shy about asking the first surgeon to recommend another for a second opinion. Better yet, look on your own: A recent study shows you're more likely to wind up with someone experienced and affiliated with a cancer program, compared with women who rely on referrals from their doctor or health plan, says Steven Katz, M.D., professor of medicine and health management and policy at the University of Michigan.

While you're asking questions, find out how your lymph nodes will be tested to see if the cancer has spread. A newer procedure, called sentinel-node biopsy, is less invasive and far less likely to cause permanent arm swelling than old-fashioned lymph node removal, but about 35 percent of patients aren't getting it, a recent multicenter study found.

Post-Surgery Neglect
Lumpectomy is just as effective as mastectomy only if it includes lymph node testing and a course of radiation treatments — generally five days a week for about six weeks. That's something your surgeon should make clear before you choose one procedure over the other.

The news: In 2003, only 71 percent of lumpectomy patients followed through with radiation, down from 79 percent in 1992, University of Minnesota epidemiologist Beth Virnig, Ph.D., reported last December. "A lot of women with serious breast cancer are not getting comprehensive treatment," she says.

Why it matters: If you don't undergo a full course of radiation, your chances of local recurrence within 10 years are as high as 30 percent, says Dr. Katz. (If you do, they drop to about 8 to 10 percent.)

What you should do: Talk with a radiation oncologist before surgery. Ask how long your treatment will last and what the side effects might be. For that matter, talk with all the specialists who may be involved in your postsurgical care. Women often feel panicked and pressured to start treatment immediately, but it's usually safe to wait two to three weeks.

Reticence on Reconstruction
If a lumpectomy isn't right for you, a mastectomy followed by reconstruction is an alternative — but you may have to bring up the subject.

The news: Only about one-quarter of surgeons regularly send patients for a plastic surgery consultation before they make their lumpectomy or mastectomy decision, researchers from the University of Michigan found in a 2007 study. Who's most likely to make that referral? Women surgeons — as well as those who treat a lot of breast cancer. Reconstruction can be done during the same surgery as the mastectomy, but it requires the general and plastic surgeons to share turf and mesh schedules, which may be inconvenient for them — even if it's good for you.

Why it matters: Both procedures will alter your appearance, but in different ways. This may seem like a minor worry when you're newly diagnosed and terrified, but it's likely to become important when you're well.

What you should do: "Ask your surgeon how your breast will look, how your clothing will fit," says Amy Alderman, M.D., M.P.H., an assistant professor of surgery at the University of Michigan. Even if you're sure you want breast-conserving surgery, you may want to consult with a plastic surgeon. Lumpectomy sometimes changes the breast more than women expect; a specialist can help you assess what might happen in your case. This is not vanity: Women who end up with extremely uneven breasts are more likely to be depressed and to worry that their cancer will return, a brand-new University of Michigan study found. Or you may want to seek out a breast surgeon who's experienced in oncoplastic techniques, which can improve the look of the breast.

Thankfully, the days of "Doctor knows best" are behind us. But that means breast cancer patients have to work with their physicians to make tough choices. To do that, women must share their fears and desires. "The doctor only knows what's on your X-ray and pathology report," says Karen Sepucha, Ph.D., a senior scientist with the Health Decision Research Unit at Massachusetts General Hospital: "What you care about needs to get on the table."

And you have to be the one who makes sure it does.

More Ways to Get the Answers You Need
Going for a Third Opinion
Kim Friedrich, 37
Mastic, NY

Kim Friedrich was in shock. In February 2007, her left breast had a tumor one-and-a-half times the size of a golf ball; because it was so big and aggressive, the surgeon told her she needed to have that breast removed, as well as the other as a precaution. A second doctor agreed. "I kept seeing myself on my deathbed," Friedrich says. She'd look at her two daughters and seize up with grief — would they grow up without her? While she would have done anything to live, she wasn't convinced she had to lose her breasts. Neither doctor had taken much time with her, she realized. Friedrich began to do research and talked to everyone she could. When an acquaintance raved about her breast specialist, at a cancer center a three-hour drive away, Friedrich pressed for an appointment. The mastectomy recommendations did not surprise the doctor. "That's old thinking," he told her. His advice: a course of chemotherapy (which shrank the tumor down to the size of a pea), followed by a lumpectomy and radiation. It was very tough, but Friedrich has no doubt she chose the right treatment — and doctor: "I got two quick assessments, and felt like they were thinking, 'Let's just do what's fastest and move on to the next patient.'"

When It's Not "Nothing"
Amalia Rigoni, 50
Olympia Fields, IL

Although she'd had a normal mammogram just a few months earlier, in March 2000, Amalia Rigoni was uneasy about a lump she felt in her lower right breast. Both her gynecologist and internist said she was fine. A diagnostic mammogram detected nothing. Still, she insisted on seeing a surgeon. That doctor, a general surgeon, told her to come back in six months. So Rigoni tried another tack: "If your mother had breast cancer, where would you send her?" The surgeon recommended a breast specialist who'd been his professor. The specialist checked her by closing his eyes and palpating the breast. "I don't like the feel of that lump," he said. "It was surreal," Rigoni recalls. "But I said, 'Thank God. At least I know what's going on.'" Almost nine years later — after a mastectomy, reconstruction, radiation, and three years of the drug tamoxifen followed by five on Femara — she's fine. Now Rigoni's a hotline coordinator for Breast Cancer Network of Strength, counseling women who may be facing the same struggle to get answers. "I tell them that doctors may know medicine, but you know your body. If something doesn't feel right, get it checked out." And, she adds, "go to a specialist."

Filling the Info Gap
Evelyn White, 48
San Francisco, CA

Support groups can provide invaluable information that patients may not get from their doctors. Evelyn White, for example, says her medical care was "great." She was diagnosed with breast cancer in February 2006, and underwent a mastectomy. But the chemo that followed left her unable to move — and she was suffering terrible crying jags. A friend thought it might be the medicine that White was taking for nausea — Ativan, a powerful sedative. She asked her doctor about stopping the drug and then, at a meeting of a cancer survivors' organization, heard about an alternative. There was a newer drug, Emend, developed specifically to prevent the nausea of chemotherapy — without causing depression. Once her physician switched the meds, "I felt a thousand percent better, physically and emotionally," says White. Later, the group helped in another key way. White had assumed her cancer was genetic (her sister was a survivor as well), and she was worried that her daughter, 24, might be at increased risk. Armed with information she got from a meeting, she underwent testing and, last year, was thrilled to be able to strike that worry off her list.