Breast Cancer Survival Guide, Part 1

The Screening-Test Shortage

Mammograms save lives; there's no doubt about that. When screening rates among women over 40 almost doubled from 39 to 70 percent between 1987 and 2000, the jump was linked to an estimated 5,000 fewer breast cancer deaths per year. Once doctors got today's two newer weapons in the screening arsenal -- digital mammography, a more-sensitive technology that's especially helpful for younger women and those with dense breasts, and breast MRIs, which find even tinier cancers at their earliest and most-treatable stages in women at high risk -- the expectation was that the death toll from breast cancer might drop even lower.

But alarmingly, that may not be the case. The remarkable lifesaving tool that is mammography is being undermined, for a number of disturbing reasons. Imaging centers, under financial pressure, are closing in record numbers. Those that are still in business have been slow to adopt the newer, higher-tech tests. Fewer doctors are choosing to specialize in breast imaging. And all this is happening at the very time when the number of American women who should be getting these screenings (those ages 40 to 84) is expected to grow, from 64.6 million to 77.4 million over the next 20 years. The numbers tell the story: Since 2001 the number of certified facilities offering mammography has dropped 5 percent, from 9,306 to 8,810. Because of the trouble involved, some women may fail to get regular screenings.

"Most women don't want to have to wait or travel for a screening test," says Etta D. Pisano, MD, Kenan Professor of Radiology and Biomedical Engineering at the University of North Carolina at Chapel Hill. A troubling new study in the journal Cancer suggests this may in fact already be happening. The proportion of women getting breast x-rays at least every two years actually dropped 4 percent between 2000 and 2005, which could translate into higher mortality rates. The decline was especially steep -- 6.8 percent -- among women 50 to 64, the group most likely to benefit, and women with higher incomes ($99,030 for a family of four with two dependent children).

"Missing even a yearly scan could mean that cancer, if it exists, may be discovered at a later, less-treatable stage," says Stephen A. Feig, MD, a professor of radiology at the University of California, Irvine School of Medicine. "This is especially risky for women in their 40s because their breast cancer can grow so fast." If you're one of the 23.3 million women over 40 who haven't had a mammogram in the last two years, pay special attention to the following.

Common Problems

Part of the reason may be that fewer physicians refer women for breast cancer screening, possibly because there is new debate about how often it is needed. The American Cancer Society still staunchly advocates annual mammograms for women over 40, but the American College of Physicians suggests many women could wait until age 50. However, many centers have shut down for lack of money, not patients. Insurance firms and Medicare generally pay very low reimbursements to breast-imaging centers. Other centers have scaled back on services to balance their budgets. All this can even make it more difficult to get follow-up diagnostic tests, like the ultrasound that revealed ABC news anchor Robin Roberts had cancer after she felt a lump in her breast.

The result? Women lacking symptoms who just want screening may wait up to four months -- even in big cities like New York -- and may have to travel 60 miles or more in rural areas, according to a 2006 survey by the U.S. General Accountability Office.

What you can do: Make appointments well in advance. It helps to book them around an event -- your birthday or an anniversary -- and set the next one at the end of your current appointment. A year goes by quickly, and it's easy to lose track of how long it's been. "Treat yourself to a lunch with friends afterwards," says Constance Lehman, MD, PhD, vice chair of radiology at the University of Washington and the Seattle Cancer Care Alliance. That way, you'll be less tempted to cancel.

Fewer physicians specializing in breast cancer has caused another crisis. The stress of the work and fear of malpractice claims -- missed or delayed diagnosis of breast cancer is a leading cause of medical malpractice lawsuits -- are to blame. "Breast imaging in general is subject to intense oversight," says Mark Helvie, MD, a professor of radiology and director of breast imaging at the University of Michigan. "This field is difficult and stressful." In a 2005 Society of Breast Imaging survey of 575 breast-imaging centers nationwide, more than 55 percent reported their doctors had been sued, half said threat of suits made it harder to fill jobs, and 29 percent had radiology vacancies.

What you can do: Try university medical centers with breast-imaging radiology fellowships, which may be better staffed.

Digital mammography is up to 15 percent more sensitive in detecting cancers in women under age 50, and among women of any age with dense breast tissue, but the machines that do the test are in alarmingly short supply. Cancer in younger women tends to be more aggressive, making early detection critical.

The percentage of imaging centers offering digital mammography has more than tripled since 2005, from 6.3 percent to 20.4 percent, according to the American College of Radiology. Still, four out of five breast-imaging facilities in the country don't offer it.

The situation is even worse for breast MRIs, available at just one in eight imaging centers. MRIs cost about $1,000 (compared with $50 to $150 for film mammograms and $125 to $225 for digital). They've proved effective in monitoring high-risk women, who are urged to get a yearly MRI and mammogram, usually starting at 30.

What you can do: Travel to a nearby city. Centers that have digital mammography are more common in urban areas, says Marisa Weiss, MD, a Philadelphia oncologist and president of Breastcancer.org. University hospitals are another option. And check the list of centers with Mammography Quality Standards Reauthorization Act technology found at www.fda.gov/cdrh/mammography/certified.html.

All the high-tech breast-imaging facilities in the world will not help if you don't make an appointment. Elizabeth Edwards admitted that she hadn't had a mammogram for some four years before finding her breast cancer lump. "We may be victims of our success," says Carol H. Lee, MD, a professor of diagnostic radiology at the Yale University School of Medicine and chair of the breast-imaging commission of the American College of Radiology. "Because we've made such remarkable progress, women may see breast cancer as less of a threat. We could see a reversal of the gains we've made over the years." And all the emphasis on high-tech tools may have devalued the much more available and still lifesaving film mammogram: "They're still the best thing we have for spotting cancers early," says Dr. Pisano, whose research found that both film and digital mammography have similar accuracy rates, though digital has an edge in finding breast cancer in women under 50 and those with dense breasts.

What you can do: Stop making excuses, even if you must wait longer than you should or drive farther than you'd like to get tested.

Should You Get a Gene Test?

If you already know that you're at high risk for breast cancer because of your family history, the answer is probably yes. Women who have either the BRCA1 or BRCA2 gene mutations can take lifesaving steps to prevent breast cancer -- or catch it early. And there's another important reason: ovarian cancer, which is much rarer than breast cancer and might be in your heredity without your knowing it. Having either breast cancer mutation, which increases the odds a woman will get breast cancer by up to 80 percent, also ups the likelihood of ovarian cancer by up to 54 percent.

Only one in 500 women has the BRCA1 or BRCA2 mutation, but the carrier rate for these faulty bits of DNA is about one in 40 for women of Jewish ancestry from Eastern Europe -- a group known as Ashkenazi Jews. Having a strong family history of breast or ovarian cancer -- and both sides of the family count -- is another factor that increases the odds you carry the mutation. Watch for one or more diagnoses of breast or ovarian cancer -- regardless of age -- in your family. If you have any of these risk factors, talk to your doctor about a referral to a genetic counselor, suggests Andrew Berchuck, MD, president of the Society for Gynecologic Oncologists.

Studies show that in women with the mutations, preventive ovary removal can reduce the risk of ovarian cancer 80 percent, and prophylactic mastectomy can reduce breast cancer risk 90 percent.

For more information about the genetic risks of cancer, check out FORCE: Facing Our Risk of Cancer Empowered, a nonprofit support, information, and advocacy group located at 16057 Tampa Palms Blvd. W. #373, Tampa, FL 33647; 954-255-8732; www.facingourrisk.org.

• A known BRCA1 or BRCA2 gene mutation
• A first-degree relative (mother, father, sibling or child) with either gene mutation
• A strong family history of breast or ovarian cancer: two or more close female relatives (mother or sister) diagnosed with breast cancer before menopause or with ovarian cancer at any age; or any male relative diagnosed with breast cancer
• Having had radiation therapy to the chest to treat lymphoma

Originally published in Ladies' Home Journal, October 2007.