Organic Style
Finding the New Normal
October 2004
Diane di Costanzo
Portraits by Mary Ellen Mark Still lifes by Charles Masters


'As awful as having cancer can be, in treatment you're doing something to kill the disease," says breast cancer survivor Suzanne Strempek Shea. 'At the conclusion, there's nothing to do except wonder how to live this life you got to keep."

"Half of Houston has seen my breasts," says Susan Rafte. It's been more than a decade since she was diagnosed with breast cancer and 10 years since her bilateral mastectomy and chemotherapy, but the disease still affects her life in profound ways. She volunteers for a program she started at Houston's M. D. Anderson Cancer Center for patients who are considering reconstruction after mastectomy. Rafte and 25 other survivor-volunteers call themselves The Flashers, and in the process of answering patients' questions about reconstruction, Rafte shows them her own results. "They're so relieved to see that after all they'll go through, it's possible to be put back together again and to have beautiful breasts," she says.

Rafte, 40, also raises money through the Pink Ribbons Project, a foundation she started with her sister, and feels empowered by her continued connection to the breast cancer community. "My work is therapeutic," she explains. And it's been noticed: This year she won the Lance Armstrong Foundation's Carpe Diem Spirit of Survivorship Award.

The fact that such an award exists is a testament to the medical community's new emphasis on life after cancer. Until recently, researchers focused primarily on diagnosis and treatment. In 1996, the National Institutes of Health, had studied only a few dozen studies on cancer survivorship; today there are more than 200, and the federal government has even set up the Office of Cancer Survivorship to promote research on the subject. This pastJune, the Centers for Disease Control and Prevention, in partnership with the Lance Armstrong Foundation, released a five-year plan to help every state initiate cancer survivorship support programs.

For the first time, life after cancer has become a major public health issue. Why? One reason is the sheer number of Americans involved- 9.8 million in all, says Julia H. Rowland, PhD, director of the OCS. And they're living longer, thanks to better diagnosis and treatment: Until 1990, the percentage of cancer patients who died had increased every year; since 1990, the death rate has dropped 2.3 percent annually.

Today's survivors are a proactive group. "The OCS was established in direct response to patient advocacy," says Rowland. "The government heard, 'Yes, it's wonderful that we're living longer after cancer treatment-but what about our health issues?'"

Breast cancer survivors in particular are vocal and well-organized, according to Rowland. At more than two million strong-with at least 200,000 joining their ranks every year- they're a group that's "changing what it means to be a cancer survivor," she says. They're courageous enough to discard the veil of privacy that once made "surviving" an invisible status. "Women are typically more willing to talk about their health issues, even when it involves an intimate part of the body," adds Rowland.

Here's what they want the world to know: When treatment ends, a woman's experience with breast cancer is far from over. Survivors leave their last chemo or radiation session expecting to feel triumphant, only to find themselves facing continuing physical and emotional issues, ranging from constant fatigue to depression. For most, there is no formal support system, and they find themselves struggling on their own to find the new normal.

"I don't feel like myself"

Breast cancer treatment often takes a heavy toll-with side effects that can last for months, even years.

"I hear women say they feel much older after treatment. They've lost strength. They have new pains. Chemotherapy can cause fatigue and fuzzy thinking," says Hester Hill Schnipper, chief oncology social worker at Beth Israel Deaconess Medical Center in Boston, the author of After Breast Cancer: A Common-Sense Guide to Life After Treatment, and a breast cancer survivor. "I tell my patients to give themselves at least as many months as they were in treatment to feel really well again."

Chemobrain, a condition characterized by memory loss and fogginess, can take even longer to clear, according to a study published in the Journal of Clinical Oncology in 2002. Five years after diagnosis, chemotherapy patients performed poorly on tests designed to evaluate their memory, attention, verbal abilities, and motor skills.

A woman's sex life suffers too, says Lillie D. Shockney, RN, a survivor and administrative director of the Johns Hopkins Breast Center in Baltimore. She may experience pain, vaginal dryness (one of the common side effects of tamoxifen, a drug many patients are given to prevent a recurrence), and fatigue, meaning that she's not in the mood for months and months. Her partner may feel he can't ask for sex, given her ordeal-and she interprets that as a sign he no longer desires her.

In addition, many survivors of breast cancer find their fertility suddenly in doubt. "Certain chemotherapies are known to send women into early and permanent menopause," says Janet Daling, PhD, an epidemiologist and a researcher at the Fred Hutchinson Cancer Research Center in Seattle who has conducted 20 years of studies on the relationship between breast cancer and reproductive health. Patients taking tamoxifen are advised not to conceive while they're on the drug because it may be linked to birth defects. Some doctors even go so far as to
warn survivors against getting pregnant for a few years after treatment in case the rise in hormones caused by a pregnancy fuels cancer growth. At least one study shows, however, that pregnancy doesn't appear to affect recurrence.

The good news is that oncologic social workers, such as Schuipper, and patient advocates, like Shockney, are now on staff at many cancer hospitals to talk to women about these complicated health issues. Any survivor who wants to have a baby post-treatment should also have a frank discussion with her doctor, because preserving fertility may affect treatment options. "If your doctor tells you that your risk of permanent menopause is low, you can put aside the issue of fertility and focus your energies on treatment," says Marisa Weiss, MD, an oncologist in Philadelphia who is president and founder of and founder of Living Beyond Breast Cancer, both groups that address the needs of survivors. "If your risk for infertility is moderate or high, it's worth seeing an infertility specialist before you begin treatment so you can get as much information as possible. In general, a delay of a week or so will not jeopardize your health. Ask your doctor to use her influence to help you get an appointment quickly."

Breast cancer can also change the way a woman sees herself-quite literally. Susan Chialastri, 52, of Newtown Square, Pennsylvania, recalls the energy she mustered to get through her mastectomy and chemo in 1999. "I was Superpatient," she says. But afterward, she felt bleak, robbed of her old identity. "I was always wrapped up in having long, straight, shiny blond hair," says Chialastri, whose hair grew back dark and curly. "I looked in the mirror one morning and saw Lyle Lovett staring back at me. I thought, 'So this is the new me.' I was really depressed."

Chialastri joined LBBC and learned that her sadness was normal. "Treatment is definitely battle mode, with all systems gunning to beat the cancer," says oncologist Weiss. By contrast, survivors report feeling unprotected, as if treatment were a suit of armor shielding them from danger-and they had just stepped back into a perilous world without it. "You've had surgery, you've suffered multiple assaults on who you are," explains Weiss. "I say to my patients, 'Look, you've hired all these people to take care of your body. Hire someone to help you with your emotions."

At LBBC conferences and workshops, survivors learn how to deal with depression, anxiety, and the sense of loss

that commonly follows treatment. This is especially true for women under 40. "Older patients may have more life perspective, better coping skills, and fewer responsibilities, particularly if their children are grown," says Candyce Kroenke, MPH, an epidemiologist specializing in women's health at Boston's Brigham and Women's Hospital and Harvard Medical School, and coauthor of a study of 123,000 breast cancer survivors. "When breast cancer coincides with raising a family and building a career, it can interfere with fulfilling those demanding roles and seem especially overwhelming."

At a time when survivors desperately need the support of family and friends, they may find that their loved ones are ready to move beyond the disease. "People would ask, 'So, are you all recovered? You're cured, right?" says Dorel Shanon, 44, of Philadelphia, who was diagnosed three years ago and underwent a mastectomy, chemotherapy, and radiation. Shanon tried to put up a brave front, but even her doctor noticed the decline in her spirits. "She told me I seemed depleted and down, as if I were waiting for the other shoe to fall," Shanon says. 'And then she looked at the cancer book I was reading. She said, 'Enough with the cancer books. Read a trashy novel."

Shanon's close friends were perceptive enough to continue their support-the meals kept coming, as did rides for her children to their activities. "I told them, 'Please stop! I'm fine now," Shanon says. "But they knew I still needed help."

Shanon was lucky. "One of the more unpleasant surprises for most of us is the change in friendships that cancer brings," Schnipper says. People interpret survivors' anxiety about cancer recurrence as "not getting over it" or "not wanting to move on." Friends may be on guard around you, avoiding any mention of cancer, for instance. Or they may persist in greeting you with a worried "how are you?" "The best advice is to continue to express your feelings honestly, whatever they are," Schnipper says.

 'Am I really cured?"

Virtually every survivor is haunted by the fear that the cancer will recur. Depending on the severity of the disease, the type of treatment she had, and her age, a patient's risk of another breast cancer diagnosis in her lifetime is one to 20 percent. The American Society of Clinical Oncology recommends checkups that include a thorough physical exam and a medical history every three to six months for the first three years after treatment ends -the period during which 6o to 8o percent of all recurrences are detected. After that, checkups are recommended every six to 12 months, along with annual mammograms, starting six months after treatment ends.

Some survivors are anxious to undergo a battery of tests to detect any sign of recurrence. But experts don't recommend MRIs, ultrasounds, bone scans, blood tests, and other screenings unless a woman has such symptoms as joint or back pain, chronic headaches, or respiratory problems. "Because patients are having frequent mammograms and medical checkups, recurrences are likely to be caught by the doctor even before feeling a lump or inflammation or before symptoms have a chance to set in," says Weiss. "To have all those scans and tests in the absence of symptoms is not productive or even economically feasible."

The hard truth is that a recurrence is generally incurable, unless it's contained in the breast. If the cancer has metastasized to the lungs, bones, or blood, a patient will be in ongoing treatment for years, with long remissions if she's lucky. "Whether you find your recurrence in January or March, it makes no difference in terms of your survivorship," says Weiss. "So it doesn't make sense to go looking for cancer with expensive and invasive tests."

"Live for the future."

The most important thing a survivor can do is to look ahead. "Give yourself something to live for," advises Elyse S. Caplan, 47, who was diagnosed with breast cancer 13 years ago and now serves as LBBC's education director. "When I was diagnosed, I told my doctor I wanted to live to attend all three of my boys' bar mitzvah services. I said, 'You've got to get me there."' Now that she's accomplished that, Caplan's new goal is to see her youngest son, age 15, graduate from high school.

Susan Rafte has never wavered from her conviction that she has a long life ahead of her. "I'm a firm believer in thinking myself well," says Rafte, who was told she had only a 10 percent chance of surviving breast cancer when it recurred just six months after her first treatment ended in 1994. "I choose to have a positive attitude," she says. "Even if it doesn't help my survival in the long run, it helps me from day to day"

Dorel Shanon is still grappling with the role cancer continues to play in her life. "I won't say it's been a good thing. I liked my life before cancer," she says. "But it has had its revelations. Before I had the disease, I would marvel at cancer survivors. They seemed like a different species, so brave and resilient. Now I know we all have it in us. You just don't know what you're capable of until you're challenged." 

What cancer teaches you, adds Caplan, is a profound appreciation for life's joys: "My middle son recently graduated from high school, and I smiled for weeks and weeks afterward. I really value and savor those milestones. I never take the good things in life for granted."