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As you undergo clinical breast exams, it's important to remember you know your body better than any doctor. If you've heard any of the following comments from your doctor, consider seeking a second opinion -- or another physician."You're too young to have breast cancer."
According to the American Cancer Society, about 75 percent of women who get breast cancer are age fifty or older. But it's estimated that 9,000 American women, aged forty and younger, will be diagnosed with breast cancer in 2000. "And by and large, younger women have more aggressive tumors," says Susan Miesfeldt, M.D., director of the Cancer Genetics Clinic at the University of Virginia Health Sciences Center, in Charlottesville.
Doctors recommend that all women begin breast self-exams at age twenty. "It's a way to become familiar with what's normal for your breast tissue," says Miesfeldt.
In 1998, the American Cancer Society (ACS) revised its guidelines and made forty the age when women should begin having annual mammograms. "Before, we were recommending mammography every one to two years in the forties," says Joann Schellenbach, an ACS spokesperson. But recent Swedish studies found a 30 percent decrease in breast-cancer deaths on average when women in their forties have annual mammograms.
Not true. Hereditary breast cancer is the exception, not the rule. It accounts for only about 10 percent of cases. In the other 90 percent, cells become cancerous spontaneously with no known cause.
A good doctor will carefully review your family history to find out if you might have inherited a genetic mutation that indicates a higher risk. The biggest clue: numerous close relatives who had the disease, especially at young ages. "People concentrate on mothers and sisters, but it's important to look at the whole family," says Miesfeldt. "Breast cancer can be passed down from the father's side."
You're still at risk. However, the risk would be even higher if your mother had developed the disease when she was younger. Here's why: When a woman inherits a mutation in the breast-cancer gene, most doctors agree that the disease will probably emerge before menopause (if she develops it -- and not all do). That's why, if your mother had early breast cancer, you have twice the average risk of developing it.
If your mother gets breast cancer after menopause, the chance that her disease has a genetic component is reduced. Still, in a small percentage of cases, postmenopausal breast cancers do have genetic roots. So, even if your mother's late-onset breast cancer is the only known case in your family, your own risk of developing the disease is 1.4 times higher than average.
The bottom line: Tell your doctor about family members with breast and other cancers -- no matter when the disease was diagnosed. She may recommend having a baseline mammogram in your twenties or thirties, with follow-up tests every year.
It's not that simple. This blood test raises difficult questions about everything from family relationships to employment discrimination and insurance coverage.
"It's absolutely essential to have genetic counseling before deciding to undergo testing," says Claudine Isaacs, M.D., medical director of the Cancer Assessment and Risk Evaluation Program at Georgetown University's Lombardi Cancer Center, in Washington, D.C. "What's appropriate is for the doctor to say, 'There may be a hereditary component to the cancer in your family, and I would suggest that you get genetic counseling to consider testing.'"
Prior to testing, the counselor takes a detailed family history, assesses your genetic risk and helps plan your response to results. If the genetic mutation is discovered, some patients choose to screen more vigilantly; others opt to surgically remove healthy breasts in a controversial procedure called prophylactic mastectomy. Studies are currently under way to determine whether taking the drug tamoxifen can decrease breast-cancer risk in carriers of the BRCA1 and BRCA2 gene mutations.
"Unlike other medical tests, genetic testing doesn't just affect the individual," says Isaacs. "If a woman tests positive, it affects her sisters and even her cousins."
In fact, high-risk families should have a group discussion about testing. "The best person to test first is the family member most likely to have the gene mutation -- the one who developed breast cancer at an early age," recommends Isaacs. If the relative with cancer doesn't have the mutation, getting healthy family members tested probably does not make sense. She may have an as-yet-unknown mutation that can't be tested, so the result may be a false negative. If she does have a known mutation, "then when her healthy sister gets a negative test result, it's far more likely that that's a true negative," explains Isaacs.
When your doctor prescribes a mammogram, get information on mammography centers he recommends. "The more barriers a doctor can remove for the patient-cost, location or even providing the phone number-the easier it is for the patient to comply with his instructions," says Coscarelli. And, if your mammography center has a good working relationship with your doctor, you may get the advantage of a "team" approach to care.
The 1992 Mammography Quality Standards Act (MQSA) states that all mammography facilities in the United States must be certified by the Food and Drug Administration. To get certification, a center must produce films that are clear enough to reveal even small cancers, have X-ray equipment that uses a low level of radiation and employ radiologists who read a minimum of 480 mammograms a year and continue required courses in the field.
"These are stringent requirements," says Judy Destouet, M.D., a member of the American College of Radiology's Breast Task Force. "No other test in radiology requires that kind of monitoring."
In finding a center on your own, also ask whether it offers cutting-edge diagnostic tools. For example, core needle biopsy, introduced in the early nineties, allows a surgeon or radiologist to retrieve a tissue sample that a pathologist can screen for cancerous cells. The procedure can be done (with your doctor's permission) as soon as a mammogram reveals the lump. Not only will you avoid the more invasive traditional biopsy surgery, you bypass the anxiety-ridden week or longer you might have spent waiting to get that procedure scheduled and done.
This is no time for blame. Preliminary results of a recent large-scale study conducted in China found that women who were taught to do self-exams were more likely to get lumps checked out. But those who were diagnosed with cancer survived no longer than women who had cancer but had not done self-exams.
However, finding tumors early is linked to survival. And, in the absence of a test that detects precancerous cells (as the Pap test does for cervical cancer), mammography is the best method of early detection.
"By the time you can feel a tumor, it's about two centimeters in diameter and it may have been there for as long as eight to ten years," says Susan M. Love, M.D., adjunct professor of surgery at UCLA School of Medicine and author of Dr. Susan Love's Breast Book (Addison-Wesley, 1995).
Statistics aside, however, she advocates knowing your own breast tissue. "If you do feel something abnormal," Love says, "see a doctor and get it checked out."
Most lumps are not cancer, according to the ACS. But your doctor should be able to pinpoint exactly what it is. Cysts, fibroadenomas, pseudolumps and even premenstrual lumpiness are a few possible explanations. Make sure the appropriate tests are done to confirm a diagnosis. If there's any doubt, ask for a biopsy.
When your doctor is vague, or if his diagnosis leaves you dissatisfied, seek another opinion. Don't be reluctant to press the issue: The number-one cause of medical malpractice suits in this country is the delayed diagnosis of breast cancer, according to the ACS.
This comment may seem harmless, but "when a woman's waiting for the results of her biopsy, she's in incredible distress," says Coscarelli. She cites a recent case in which a woman's doctor was on an airplane when her test results came in: "The woman had been instructed to call the pathologist for her results on Friday. But by six o'clock, she hadn't been able to reach anyone and she was devastated at the prospect of worrying all weekend." She contacted Coscarelli, who was able to relay a message to the doctor when his plane landed; the patient got her results that evening.
To avoid communication glitches, Coscarelli advises asking specific questions in advance: If I have the test today, when will you get the results? If you're not available, who else can give me the results? Should I call your office or make an appointment? Can we plan a telephone call at a specific time? Keep in mind that test results may be delayed for legitimate medical reasons. "Sometimes the pathologist needs a little more time," Coscarelli notes.
"When a doctor says that, you're in the wrong place," says Theodore Tyberg, M.D., clinical associate professor of medicine at Cornell University Medical College, in New York City, and co-author of Hospital Smarts. "It's a real no-no, especially for breast cancer or any other life-threatening illness."
Don't be intimidated. A good doctor will expect -- and even encourage -- you to seek another opinion. A second opinion can be deeply empowering for patients. When it confirms your original diagnosis, you'll begin your treatment feeling confident. And, if it turns up new information, you and your doctor will gain insight into your case.
However, your doctors may well disagree on treatment options. This is especially common when you consult doctors from different specialities, such as a radiologist, breast surgeon, pathologist and oncologist. You may end up with an overwhelming amount of information, but you don't need to digest it alone. Insist that the various doctors handling your case discuss your treatment. This type of team approach helps patients get the best possible care.
"A good doctor will welcome informed questions from well-read patients," says Barbara F. Sharf, Ph.D., professor of medical humanities at Texas A and M University, in College Station. "But there are still doctors who say patients should not have access to the kind of medical information found on the Internet." Remember that books can become outdated quickly, and Web sites may be inaccurate. Look for information that is timely and sources that are reputable.
Keep in mind: If you're obsessively triple-checking every word your doctor utters, maybe you should look for a physician who inspires a greater level of trust.