Harvard Women's Health Watch | October 2006
On becoming a breast cancer survivor
Getting through treatment is only the beginning.
The impact of breast cancer is as individual as the women who survive it. It can be an arduous though temporary challenge or an experience so transformative that it divides existence into two parts — before and after.
Perry Colmore has experienced the disease both ways. When she was 45, she was diagnosed with lobular carcinoma in situ, a noninvasive disease that signals an elevated risk for invasive breast cancer. Given the choice of preventive double mastectomy or simply removing the small tumor, she opted for a lumpectomy. “I breezed right along, assuming I’d be among the 80% who don’t have a recurrence,” she says.
And so she was — for seven years. Then a lump in her other breast turned out to be an invasive cancer that had already reached 12 lymph nodes. She underwent a mastectomy followed by radiation and chemotherapy.
Colmore has been cancer-free for more than a decade, but her health has suffered. Radiation treatments damaged one of her lungs, causing wheezing and breathlessness. She’s weathered bouts of pleurisy and pneumonia. And intensive antibiotic therapy for her lung diseases triggered severe diarrhea, resulting in a 40-pound weight loss.
Colmore’s experience isn’t typical, but it does suggest the range of later effects that can follow in the wake of breast cancer. The good news is that most breast cancer survivors are living long past the five-year survival benchmark of yesteryear. But many also find themselves facing the long-term consequences of the treatments that saved their lives.
Growing recognition of survivor needs
As the ranks of cancer survivors have swelled to more than 10 million, their health has attracted increasing attention from scientists and physicians. The Institute of Medicine (IOM) has formed an expert committee to consider the quality of life and care of cancer survivors. The panel’s report, From Cancer Patient to Cancer Survivor: Lost in Transition, published in 2005, acknowledged that cancer care too often ends when patients complete their initial treatments. There may be little communication between the patients’ oncology teams and their primary care doctors. The IOM advises physicians to craft a “survivorship plan” to guide health care in the years following treatment.
Several large cancer hospitals around the country, such as Dana-Farber Cancer Institute in Boston, Fred Hutchinson Cancer Research Center in Seattle, and Memorial Sloan-Kettering Cancer Center in New York, have already instituted special programs or clinics for survivor care. At these centers, clinicians specialize in keeping cancer patients healthy and strong, reducing the risk of subsequent disease and, for breast cancer survivors, recognizing and treating the effects of breast cancer therapy.
Schedule of follow-up exams for breast cancer survivors |
| Exam | When |
| Physical exam | |
| Breast self-exam | Monthly |
| Mammogram | Annually |
| Pelvic exam | Annually |
| Source: Guidelines developed by the American Society of Clinical Oncology |
Treatment’s toll on the body
Cancer survivors are at risk for two kinds of side effects from treatment: Long-term effects, which begin during therapy and persist after it is completed, and late effects, which arise months or even years after treatment has ended.
The most common long-term effects include the following:
Fatigue. About 30% of breast cancer survivors are fatigued for five years or more after successful treatment. Any number of physical factors, including anemia and inflammation resulting from radiation or chemotherapy and loss of muscle mass, can account for fatigue during and after treatment. The psychological toll of treatment can also be exhausting. Though there’s little research on the subject, many women continue to shoulder responsibilities for jobs and managing households during and following their cancer treatment. Who wouldn’t be exhausted?
Weight gain. For reasons that science hasn’t fully explained, women undergoing breast cancer chemotherapy gain an average of five to eight pounds. Moreover, the excess poundage is all fat, rather than a combination of fat and lean tissue.
Nerve damage. Surgery can damage nerves in the treated breast and chest, resulting in numbness or pain. Chemotherapy may affect peripheral nerves, particularly those in the hands or feet.
Late effects can include these:
Lymphedema. Up to 25% of breast cancer survivors experience some degree of arm swelling following the removal of underarm lymph nodes, which is essential for evaluating the extent of the disease. Lymph node excision can damage the lymphatic drainage system, causing fluid to build up in the arm on the affected side. Lymphedema can appear weeks or months after surgery and is exacerbated if the arm is injured or infected.
Menopause discomforts. After breast cancer treatment, many women take tamoxifen, a selective estrogen blocker, for five years to prevent a recurrence. On the positive side, tamoxifen increases bone density and improves cholesterol. But it also produces menopausal symptoms, primarily hot flashes and vaginal dryness.
Osteoporosis. Women who undergo menopause following chemotherapy have a higher rate of bone loss than women who have a natural menopause. Aromatase inhibitors, such as anastrozole (Arimidex), letrozole (Femara), and exemestane (Aromasin), which are frequently a part of breast cancer therapy, block the production of estrogen in fat and other tissues. Treatment with these drugs is associated with a higher risk of fractures than tamoxifen therapy and may also be responsible for joint and muscle pain.
Subsequent cancer. Breast cancer survivors have an increased risk of developing cancer in the other breast. Also, some treatments increase the probability of developing certain other forms of cancer, although the risk is very low. For example, tamoxifen is associated with an increase in endometrial cancer risk, and high-dose cyclophosphamide therapy heightens the risk of acute myeloid leukemia.
Lung damage. Lung tissue can be damaged if radiation to the chest cavity reaches the lung. In about 1% of survivors, it leads to radiation pneumonitis, an inflammatory condition that usually occurs two to three months after treatment and can result in susceptibility to respiratory infection.
Congestive heart failure. Cardiac damage is increasingly rare as chemotherapy doses decline, but women who received high doses of doxorubicin (Adriamycin) may sustain damage to the heart muscle. Such damage can result in fluid buildup in the body and lungs, making it more difficult to breathe and exercise.
Breast cancer’s effects on the psyche
The end of treatment is one of the most stressful events in the cancer experience. Often friends and family expect a woman to be fully engaged in life the day she finishes treatment. But while a breast cancer patient may rejoice that radiation and chemotherapy have ended, she typically feels anything but normal. Not only is her body irrevocably changed, she’s also likely to be on uncertain emotional terrain.
“What others usually don’t realize is that the recovery from treatment may take as long as the treatment itself,” says Hester Hill Schnipper, Director of Oncology Social Work at Beth Israel Deaconess Medical Center in Boston. Schnipper and other health professionals who work with cancer survivors have observed that the emotional effects of cancer therapy are far less recognized than the physical effects, yet they are just as profound.
Typically, a woman marshals all her psychological defenses to get through treatment. When therapy is over, she can finally let her guard down but then may be flooded with intense and conflicting emotions. The occurrence and intensity of reactions vary from woman to woman, but most experience the following:
Fear and anxiety. For women who have just completed chemotherapy or radiation — or five years of tamoxifen therapy — the end of active cancer treatment can be disconcerting. After months of regular medical care and attention, they often find themselves abruptly severed from the oncology team that’s sustained them during treatment. Equally common, and more distressing, is the specter of recurrence, which can color every aspect of life.
Grief. Breast cancer brings loss — be it as minor as the claim to perfect health or as monumental as the ability to have children. Grieving is a natural response to loss, and it may take months or years to complete.
Erosion of self-image. The physical effects of treatment — loss of a breast, hair loss, weight gain, radiation burns, and surgical scars — are reminders of one’s vulnerability. Breast cancer survivors may feel that they’re less attractive and that their vitality is diminished. The adjustments can be especially hard for young women who are thrown into menopause by chemotherapy.
Changes in intimate relationships. It goes without saying that a woman’s sex life is affected by breast cancer. Illness is a notorious thief of libido. In addition, a survivor’s partner may feel breast cancer’s toll on body and body image as deeply as the survivor herself.
Effects on the family. Breast cancer is a family affair. Family members are likely to want to get the household back to normal after treatment ends, and they may not be patient with the partner or mother who needs more time to recover.
Resources for survivors After Breast Cancer: A Common-Sense Guide to Life After Treatment, Hester Hill Schnipper, Bantam Books, 2006 LIVESTRONG SurvivorCare
866-235-7205 (toll free)
www.livestrong.org Cancer Survivors Network
American Cancer Society
800-227-2345 (toll free)
www.acscsn.org The Wellness Community
888-793-9355 (toll free)
www.thewellnesscommunity.org Breast Cancer: Strategies for Living, a Harvard Medical School Special Health Report, Harvard Health Publications, 2006 Living Through Breast Cancer (from Harvard Medical School) by Dr. Carolyn Kaelin, McGraw-Hill, 2005 The Breast Cancer Survivor's Fitness Plan (from Harvard Medical School) by Dr. Carolyn Kaelin, McGraw-Hill, 2006 |
Being a survivor
Breast cancer is a rough storm, but many women weather it well, buoyed by gratitude for life, hope for the future, and the support of loved ones. Some, like Perry Colmore, use it as the fulcrum for a major life change. When breast cancer returned, Colmore was a newspaper editor. As she experienced the intensity of the disease, she decided that it was a story worth telling. She told it through the experiences of 40 breast cancer survivors in the photo-essay book, Living with Breast Cancer: 39 Women and One Man Speak Candidly about Surviving Breast Cancer (Andover Townsman, 1997).
Perry and her husband also took stock of their life together. Their children were grown, so they traded their suburban home for an apartment in the city and a house on the beach. She quit her job to devote more time to working with breast cancer patients. She now volunteers at a hospital as a companion for women undergoing treatment and leads a cancer support program at her church. “I can’t say that I’m happy I got cancer, but I’m happy with my life,” she says.
Getting the help you need
If you’re a breast cancer survivor, these steps may help:
Work closely with your primary care doctor. According to Jennifer Potter, M.D., director of the Women’s Health Program at Boston’s Beth Israel Hospital, it’s important to make sure your clinician has your complete cancer history — including surgical reports, radiology records, and drug information. At your first post-treatment visit, you may want to discuss your treatment experience and openly air your fears. If your doctor seems ill at ease with your new status, find one who has experience with cancer survivors.
Join a support group. Breast cancer survivorship may not be a sorority you ever intended to join, but its ranks are legion. It can be therapeutic to talk with someone who’s walked in your shoes. If you’re looking for a specific type of survivor group, for example, single women or mothers of teenagers, there’s a good chance you can find it — if not in your community, then possibly online.
Stabilize your relationships. If cancer has put a strain on your relationships or unearthed problems that took root earlier, consider getting help. A mental health professional can help you develop healthier ways of interacting.
Treat yourself. When you were sick, it was probably comforting to have others take care of you. You may not be a patient any more, but there’s no reason for the nurturing to end. Make a list of things that might give you pleasure — from a vase of fresh flowers to a visit to a day spa — and schedule them into your life.
Invest in the future. This can be something as small as planting an amaryllis bulb to bloom in a few months or as large as launching a new career. Planning for the future is one of the best ways to overcome the fear that it won’t be there.
I know a couple of women whose families have lost everything because of the enormous cost of treatment. Many of us don't have access to health insurance and, once you're diagnosed, premiums skyrocket. The following information comes from the Susan G. Komen Foundation. 
