Photo by C.J. Burton
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Baffled by Choices
By Kelly Griffin, September & October 2006
New breast-cancer patients often face a confusing series of decisions. Here’s how to map the route to recovery
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Today, like every day, roughly 550 American women will be diagnosed with breast cancer. Along with the sorrow and terror that a cancer diagnosis can cause, most newly diagnosed breast-cancer patients face a perplexing array of decisions: lumpectomy or mastectomy? If mastectomy, reconstruction or no? If reconstruction, what kind? The list goes on and on.
Forty years ago women with breast cancer had no decisions to make. A radical mastectomy that removed not only breast tissue but underlying muscle was the only treatment offered. Now that there are more proven treatments to choose from, there are naturally more decisions to make. And doctors are increasingly reluctant to tell women what to do.
In the 1970s and '80s the women's health movement fought for changes that are taken for granted today: patients sharing their stories in support groups, arming themselves with information, questioning their doctors. In response, doctors began asking women in general—and breast-cancer patients in particular—to make more and more of their own decisions about care. That sounds great in the abstract. But in the concrete—at the moment of diagnosis—it can be a crushing burden.
What women need to know, first and foremost, is that the selection of one breast-cancer treatment over another is not usually a life-or-death decision. "Women get this feeling that when they're given these choices, there's a right answer and a wrong answer, and if they choose wrong, they're going to die," says UCLA breast surgeon Susan Love, M.D. "That's just not so." In fact, many of the choices a breast-cancer patient can make will change her survival odds very little, if at all. They are choices about which treatment best fits the patient's life and personality.
So if you are a new breast-cancer patient, how do you negotiate all the choices without getting overwhelmed? The answer, experts say, is to make decisions the same way you'll make it through treatment: one deliberate, difficult step at a time. Bear in mind that, except in very rare cases, a breast-cancer diagnosis is not an emergency. Experts estimate that by the time a breast-cancer tumor as small as 1 centimeter is detected, it has been present for at least five to seven years. A few weeks is a very short time in the life of the cancer—but it's precious time you can use to gather information, find physicians you trust, and become comfortable with your treatment choices.
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Barbara Brenner, executive director of the advocacy group Breast Cancer Action, advises women to first figure out what information they need. Some women will want to plow through statistics and read about every possible side effect. Others will find it more helpful to talk to women who have been through treatment. "Ask yourself what and how much you need to know—not what your sister or cousin would need to know," Brenner says.
There are two moments when getting a second medical opinion may be especially helpful, says breast-cancer surgeon—and breast-cancer survivor—Carolyn M. Kaelin, M.D., M.P.H. The first is immediately after your diagnosis, when you learn the nature of your tumor; the second is after your lumpectomy or mastectomy, when you learn whether the tumor has spread, and if so, how far. It's also a good idea to get a second opinion if your physician isn't taking the time to answer your questions or if you're just not clicking.
"We always recommend a second opinion if people have the resources," says Brenner. "Sometimes it's helpful to have a second person look at the pathology report. It also helps you take a breath before you make decisions."
Each patient's case is unique, but they all share certain decision points. Below, you'll find a starter's guide to choosing the care that's right for you.
Surgical solutions
The first set of decisions involves what to do about the breast itself. Today, 80 percent of patients with early-stage cancer are candidates for a breast-sparing operation called a lumpectomy, followed by radiation. A modified radical mastectomy—which removes all breast tissue but spares muscle—may be the only option if the tumor is large or if there are multiple tumors. But for most women both surgeries are valid choices. If your doctor offers only one option, ask why. Perhaps the doctor feels more comfortable doing one surgery than the other—or is making assumptions about your preferences.
The choice between mastectomy and lumpectomy does not affect your odds of survival. Several large, long-term studies have shown definitively that the two procedures are equivalent under most circumstances. "Since the two procedures are equal," says Love, "you might as well make the choice based on what feels right for you."
If you choose mastectomy, you'll then have to decide whether to have reconstructive surgery at the same time, later on, or not at all. If you choose reconstruction, you may be given a choice of a saline or a silicone implant or one of several procedures that use tissue from your belly or elsewhere in your body to fashion a new breast. Each comes with its own benefits and risks—implants can become hard, leak, or burst; transplants of your own tissue are delicate and difficult operations. Hearing from women who have had the surgery—whether in person at a support group or online on a discussion board—may be helpful in figuring out which reconstruction, if any, will best suit you.
If you choose lumpectomy, you will also need radiation treatments, to eradicate any errant cancer cells in the breast. (Some mastectomy patients whose cancer has spread also receive radiation to the chest.) The standard course of radiation requires daily treatments for five or six weeks, which can be difficult to arrange if you live in a remote area.
As part of your surgery, the doctor will remove lymph nodes in your armpit to see whether the cancer has spread. Though it used to be standard practice to remove most of these nodes—a procedure that can lead to chronic swelling in the arm—a newer technique called sentinel node biopsy allows the surgeon to remove only one or a few nodes, which are examined while you are under anesthesia. If no cancer is found, the other nodes are left in place. For most women, this procedure is "the standard of care in 2006," says Eric Winer, M.D., director of the Breast Oncology Center at the Dana-Farber Cancer Institute in Boston.
Drug decisions
Whichever surgery you choose, you will still need to make a second round of decisions regarding cancer that may have spread beyond the breast. "If you have a dandelion in your front yard, we can dig up the dandelion by the roots and have it gone, or we can dig up your entire yard and have it gone," explains Lillie Shockney, who counsels newly diagnosed women at the Johns Hopkins Avon Foundation Breast Center in Baltimore. "Both get rid of the dandelion. But digging up your entire front yard or just one dandelion has nothing to do with whether or not any seeds from that dandelion blew away and landed in your backyard."
That's where systemic therapies—hormone therapy, immune therapy, and chemotherapy—come in. These treatments target cancer cells that might have gotten out of the breast, traveled through the lymphatic system or bloodstream, and taken root elsewhere. Your systemic-therapy options will depend on the type of cancer you have, whether cancer has been found in your lymph nodes, and other factors.
- Hormone therapy. If you are among the 70 percent of breast-cancer patients whose tumor cells have estrogen receptors—sort of like locks into which the hormone estrogen fits like a key—hormone therapy offers the best chance of keeping cancer at bay. It is usually easier to tolerate than chemotherapy. Because of this, some fear it is a less aggressive approach, but it is the most effective drug treatment for women in this group, says Winer. Many women with estrogen-receptor-positive tumors undergo chemotherapy as well, but hormonal therapy is the first line of defense.
The two most commonly used hormonal therapies are selective estrogen-receptor-modulators (SERMs), such as Nolvadex (tamoxifen), and aromatase inhibitors, such as Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole). With both types of drugs the effect is the same: less estrogen gains entry to the cancer cell, depriving it of the spark it needs to grow. SERMs do this by binding to receptors on the cancer cell, preventing estrogen from latching on. Aromatase inhibitors block the conversion of hormones manufactured by your adrenal glands into estrogen. (They do not stop the ovaries from producing estrogen, however, so they are prescribed only for postmenopausal women.)
Until recently, tamoxifen was first-line therapy for postmenopausal women. Several large, long-term studies, however, have found that aromatase inhibitors—alone or in sequence with tamoxifen—do a slightly better job of reducing the risk of recurrence. Unfortunately, experts still disagree about how best to apply the findings from these trials. Some say postmenopausal women who are newly diagnosed should be started immediately on aromatase inhibitors, while others say these women should get a year or two of tamoxifen before taking an aromatase inhibitor. Your doctor's experience and advice may be your best guide in making this decision.
- Immune therapy. Another option for some women with breast cancer is an immune therapy called Herceptin (trastuzumab). Herceptin blocks the effects of a protein called HER2, which is found on the surface of a cancer cell and signals it to grow. Between 15 and 25 percent of breast cancers produce excessive amounts of HER2, and these tumors tend to be more aggressive and more likely to recur. Herceptin reduces the risk of a recurrence by about 50 percent.
"For the majority of women with HER2-positive cancers, Herceptin is definitely an option," says Winer. There are caveats, though. The drug can cause heart failure, so it's not appropriate for women with heart problems. And for women with small tumors and cancer-free lymph nodes, its benefits have to be weighed against its risks.
- Chemotherapy. The best-known form of drug treatment for cancer, chemotherapy works by interfering with rapid cell division, a key feature of cancer cells. For women with metastatic breast cancer—cancer that has traveled elsewhere in the body—chemotherapy can extend life, in some cases by years. For women with large tumors, chemotherapy before surgery can shrink the tumor enough to make lumpectomy an option. And for women whose cancer has not spread beyond the breast and lymph nodes, chemotherapy can reduce the odds of cancer's coming back: on average, it reduces the risk of cancer recurrence by about one quarter.
But there are downsides to chemo, so how important that one-quarter reduction is for you depends on how high your risk is to begin with. A course of chemotherapy is often described as an insurance policy. That analogy is useful, says Love, as long as you understand how insurance works: people don't benefit equally. "If you live in L.A. and you get earthquake insurance, it's worth it because the chance of your having an earthquake is pretty high," says Love. "But if you live in New Jersey and you get earthquake insurance, you're probably wasting your money."
The most recent analysis of large randomized trials in early breast cancer found that, among women ages 50 to 69 with estrogen-receptor-negative tumors, chemotherapy reduced the risk of death by 26 percent. For women with estrogen-receptor-positive tumors, chemotherapy reduced the risk of death by 11 percent. (These women got a much greater—30 percent—reduction in mortality risk from tamoxifen.)
Statistics like these are prompting some medical oncologists to rethink the strategy of giving chemo to virtually every woman with early breast cancer, since the side effects can be significant: along with causing hair loss, nausea, and temporary fuzzy thinking called "chemo brain," some chemotherapy drugs can do permanent damage to nerves and to the tissue that surrounds the heart.
Furthermore, there's a growing realization that the benefit a woman is likely to get from systemic treatment depends on things that can't be seen under a microscope. "In all likelihood, it's not size [of the tumor] that matters in terms of the benefits of chemotherapy; it's what I call the personality of the cancer," says Winer.
As with people, what constitutes the personality of a cancer isn't what it looks like but how it behaves—whether it is sensitive to estrogen, whether it overexpresses the HER2 protein, and other features that researchers are still trying to puzzle out. Most oncologists still use tumor size and lymph node spread to help make recommendations about chemo, but more sophisticated tests to evaluate the personality of individual tumors are on the horizon.
One such test, already available for women with estrogen-receptor-positive cancer and no lymph node involvement, is the Oncotype DX. This test looks at the expression of 21 genes in the tumor to evaluate its aggressiveness, calculate the risk of a recurrence, and determine the likely benefit of systemic therapies, including chemo.
Many specialists are enthusiastic about the potential for tests such as the Oncotype DX to sort out which women can benefit the most from chemotherapy. Love, for one, encourages women to ask if the Oncotype DX test is appropriate for their cancer. Medicare and many major insurers do cover this test.
"Looking at the cells under the microscope is like looking at a lineup at the police station and guessing who the criminal is based on the way they're dressed," she says. "Sometimes it's Kenneth Lay in his three-piece suit. So you can't really tell. Being able to look at the cells' DNA is much, much better."
The final analysis
When all the test results and recommendations are in, you've gathered the amount of information you need, and you've discussed your options with people you trust, you're likely to get a gut feeling about what you should be doing, says breast-cancer advocate Brenner.
"Trust your gut," she advises, "and then try not to look backward."
Granted, that's a tall order. Even harder is imagining a time in the future when every waking moment won't be consumed by thoughts about breast cancer. But that time will come, says Kaelin, director of the Comprehensive Breast Health Center at Brigham and Women's Hospital in Boston.
"There does come a day after treatment when an entire day will go by and the nighttime is there and you realize that for that whole day, you haven't thought about breast cancer," she says. "That's a transition day that we as survivors all welcome and celebrate."
North Carolina freelancer Kelly Griffin wrote about diabetes in the November & December 2005 issue.
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