When Elizabeth Edwards announced in March that her breast cancer had returned, her peers -- other breast cancer survivors -- expressed a range of emotions. Topping the list was empathy for Edwards, whose cancer had spread to her bones. There was also pride in her bravery: She chose to be open and honest about an intensely personal health issue. Others found themselves reliving their own diagnoses. And, of course, many could not help but give way to gnawing worry about their own health. Edwards' announcement was a reminder that cancer can and sometimes does return.
However they reacted, many people -- not just survivors and their families and friends -- paid close attention to the wife of presidential candidate John Edwards. And they are likely to keep paying attention over the next year, as she commits herself to living in the national spotlight alongside her husband in his bid for the presidency.
By deciding to continue as an active player in the campaign, Edwards, 58, who was first diagnosed in 2004 when her husband was the Democratic vice presidential candidate, has made a powerful statement to all women: You can go on living, even after a diagnosis of recurrence.
"The good part of the story is if next year Elizabeth Edwards is still seen being active, campaigning for her husband," says Gary Freedman, MD, attending physician in radiation oncology and director of the Breast Radiation Program at Fox Chase Cancer Center in Philadelphia. "It could give women hope that all is not over and they still have many years of quality life, which Mrs. Edwards is hoping to have."
Earla Marshall, 52, who was diagnosed with breast cancer in 2001 and again in 2003, says she feels connected with Edwards on a deep level because of her own experiences. "[We are] on the same journey," says the Ellwood City, Pa., small-business owner. "It's great for her to be so honest and upfront with her feelings. I believe a lot of women are stronger than they realize, and when faced with certain adversities, you come out on the other side -- with that added power -- and you should encourage and pass that on to others."
Ros Innerfield, 77, another survivor who has recurrent breast cancer, says she is glad to see Edwards "show that you can talk about [your health problems] and then get on with your life. It's not something to shove in a closet that you've had a recurrence." Innerfield, who lives in Oceanside, N.Y., on Long Island, says she's noticed Edwards has become more outspoken in her husband's campaign over the last several months, which she finds inspiring. "I think it shows that this difficult problem in her life has made her stronger and more purposeful in what she believes in."
In a televised 60 Minutes interview the week after her announcement, Edwards, a lawyer until she retired in 1996, told Katie Couric that dying with cancer concerns her less than living with cancer. "Concentrate on the things that matter to you," she said. "We're all going to die. And I pretty much know what I'm going to die of now. But I do want to live as full and normal a life as I can from this point on."
How Cancer Recurs
When oncologists talk about breast cancer recurrence, they refer to two different types: local, which recurs in the breast; and distant, or metastatic, which recurs elsewhere in the body, such as in the bones, brain, liver, or lungs. Recurrence is caused by cancer cells left behind during primary surgery, even though they may not show up on tests. Edwards' cancer is distant, since it has spread to her bones.
Breast cancer may seem to have the highest rate of recurrence because breast cancer itself is the most frequently diagnosed cancer in women in the United States, except for skin cancer. Although every cancer is different (and largely dependent on the cancer's stage), lung, pancreatic, and ovarian cancer all recur more often than breast cancer. Freedman says breast cancer recurs in about 20% of survivors, compared to roughly 70% of women with ovarian cancer (which is usually detected at later stages). And he says death rates from breast cancer are actually decreasing, thanks to better and earlier detection and improved treatment.
According to Virginia Kaklamani, MD, assistant professor and a medical oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago, when breast cancer recurs, two-thirds of the time it shows up in places other than the breast. The risk of recurrence depends on the length of time from the first diagnosis (the more quickly it recurs, the more aggressive the tumor and the worse the prognosis) and the characteristics of the tumor, such as its size.
Kaklamani says in Stage 1, when the breast cancer has not spread to lymph nodes and the tumor is under 2 centimeters, it returns in about 10% of patients. At Stage 2 (when the tumor is 2 to 5 centimeters) and Stage 3 (when the tumor is larger than 4 centimeters), 20% to 30% and 40% to 70% of survivors, respectively, will have a recurrence.
Freedman says the most important factor is whether the recurrence is local or distant. "Local recurrence can still have an excellent prognosis," he says. "Distant recurrence can't be cured, except in rare cases with a single isolated occurrence in the lung or liver." Other factors include where the distant recurrence is (cancer in the bone has a better prognosis than cancer in an organ) and whether it is estrogen receptor-positive, or ER-positive, which means it may respond to hormone therapy.
Freedman says when the vast majority of tumor cells are confined to the breast area, they can be cured with surgery and radiation; and chemotherapy and hormone therapy can even eradicate small amounts of undetectable, microscopic disease that has spread through the bloodstream to, for example, the liver. "But there are very few cancers that can be cured once they have spread to other organs and are systemic like leukemias, lymphomas, or testicular cancers that are the most sensitive to chemotherapy," Freedman says, adding that doses of chemotherapy simply can't tackle the large number of cells present when the cancer spreads to distant organs. So once breast cancer spreads, it can be controlled but not cured.
Current cancer research involves work to better individualize the prediction for recurrence, based on a woman's gene profile. Freedman says this is exciting, because more precise predictions will help doctors select the most effective type of therapy, based on the cancer's tumor characteristic, to prevent recurrence.
When his patients are first diagnosed with breast cancer, Freedman tells them it's going to be cured. "But after a recurrence," he says, "we say we'll try to keep it in remission and prolong your life. We manage it more like a chronic illness. In Mrs. Edwards' case, she knows she will always be living with breast cancer now."
When Breast Cancer Returns: Emotional Fallout
Freedman says Edwards' news scared a lot of his patients. "Nobody wants to hear about recurrence -- whether you're in treatment or you're out of treatment and think you're out of the woods," he says. "They wake up with a backache, and they think it's the cancer. They think they can't just have an ordinary backache anymore."
No matter how frightening the prospect, experts say starting treatment quickly after the diagnosis of a recurrence is critical. Kaklamani says some of her patients are bitter because their cancer spread after their first round of treatment, and they are not willing to be treated again. "But the sooner treatment starts, the better," she says. "We've proven that treatment not only prolongs life but can improve the quality of life. They can live better."
Treatments include surgery, radiation therapy, hormone therapy, antibody therapy, and pain medication. Kaklamani says 70% to 80% of breast cancers respond to hormone therapy, so that is often the first-line treatment when the patient is ER-positive.
"Because of the wide array of effective therapies, I'd say breast cancer has the best prognosis of any cancer after recurrence," says Freedman. "We have several hormone therapies, several chemotherapies, and several targeted therapies. Women are managed with these treatments to prolong survival."
Edwards' own treatment regimen includes a daily chemotherapy pill and a monthly intravenous treatment, which is a bone strengthener. She remains active, and a New York Times article this summer reported that her cancer hasn't hampered her daily life.
Survivor Earla Marshall says she subscribes to the same philosophy she sees Edwards following: "Listen to your medical team's advice, take rest when you need to, and otherwise get on [with] living, until your mind and body indicate that you cannot," she says. "Every second that we are on this earth, we are alive and we should embrace life as fully as we can."
When Breast Cancer Returns: Tips for Coping
Hearing her breast cancer has returned is every survivor's worst nightmare. But, says Sandi Kafenbaum, LCSW, with the Adelphi N.Y. Statewide Breast Cancer Hotline & Support Program, you can do a lot to manage the news and take care of your health. Kafenbaum, who coordinates breast cancer support groups and counseling, offers these tips:
Speak up. Don't be afraid to ask your doctor questions and to get second opinions. There is no silly question and no wrong feeling.
Share. Find people to talk to, and figure out who is helpful and who isn't.
Protect yourself. If people are negative around you, tell them, and minimize your contact with them.
Accept help. Say yes when others offer assistance, such as running errands, watching your children, driving to chemo. It will enrich your friendships.
Be here now. Find out what works for you and what you like in your life, and do more of that, whether it's yoga or painting or walking around the block and hearing the birds.
Heed your needs. Before you sign on with chat rooms, hotlines, and support groups, take time to figure out what you need -- not what your daughter or your mother says you should do.
Reach out. When you're ready, join a support group. To find local support contacts, call Adelphi's hotline: 800-877-8077. Another resource is the Y-ME National Breast Cancer Organization: 800-221-2141.
Originally published in the September/October 2007 issue of WebMD the Magazine.