Back in 1995, when Norma Tolmach learned that she had breast cancer, she thought she would be dead within a year.
"I assumed diagnosis meant death," says Tolmach, an antiques importer from Great Falls. In her mid-fifties at the time, Tolmach took a "final" family trip to Disney World with her two daughters and two grandchildren. She started preparing to die, even deciding which psalms should be read at her funeral.
Today, Tolmach is well on her way to joining the ranks of the nation's more than 8 million cancer survivors--defined as those living five years after diagnosis. In the early 1980s, just one in two cancer patients survived; now the odds are three out of five.
"Cancer is rarely an acute illness followed by death, but rather an acute diagnosis followed by a chronic illness," says Ellen Stovall, executive director of the National Center for Cancer Survivorship, based in Silver Spring. "It's no longer the 'big C,' but a series of 'little C's'--common, complex and sometimes curable."
Quality of life--not survival--has emerged as the central concern for many cancer patients. Not surprisingly, they report high levels of emotional distress. Studies show that between 25 and 60 percent of cancer patients meet the diagnostic criteria for clinical depression. Unfortunately, oncologists, or cancer specialists, and other doctors do not often refer patients for mental health treatment.
"The psychiatric care of cancer patients remains a seriously under-resourced area both in the U.S. and Europe. I assume that many are suffering in silence," says Margaret Watson, a clinical psychologist at the Royal Marsden Hospital in Sutton, England, and an expert in the psychology of cancer recovery. In a paper recently published in The Lancet, a British medical journal, Watson linked severe depression among breast cancer patients to an increased risk of death within five years of diagnosis.
Shortly after her radical mastectomy, Tolmach joined a support group in Reston.
"It was valuable to bond with others who were going through the same thing," she says. She has maintained these relationships, exchanging cards with fellow survivors on their "anniversaries"--the dates of their diagnosis or surgery. But after undergoing two rounds of chemotherapy and radiation, Tolmach still found herself feeling morose.
"I kept looking for the 43,000 women who die every year from breast cancer," she says. Tolmach saw a psychiatrist for a year for talk therapy and began taking an antidepressant. "My psychiatrist changed my life. She helped me believe that I could survive."
Tolmach has also benefited from having a supportive husband. Research shows supportive relationships are crucial for cancer recovery. In a study of 213 newly diagnosed breast cancer patients, Nancy Avis, a health psychologist at New England Research Institutes Inc. in Watertown, Mass., found that social support has a greater effect on quality of life than any medical factor--such as time since diagnosis or type of surgery. Support helped women remain positive without resorting to wishful thinking.
From the moment they are diagnosed, cancer patients face a variety of potentially debilitating stresses, says Julia Rowland, who heads the National Cancer Institute's office of cancer survivorship. Initially anxious about sheer survival, cancer patients typically start worrying later about pain, disfigurement and dependence before shifting to financial concerns about their illness.
"These issues don't necessarily go away in an orderly sequence," says Rowland. She believes all newly diagnosed cancer patients should be encouraged to consult a mental health professional.
Most major hospitals sponsor free support groups that provide patients with the latest information on the disease as they make decisions about treatment. In addition, patients with advanced disease--cancer that has recurred or spread beyond its original site--may gain strength from sharing their experiences with others in a more structured format called a therapeutic support group.
"Groups aren't a pity party," says Jane Lincoln, a social worker at the George Washington University Cancer Center, who helps lead a 90-minute weekly session. "Nothing can duplicate the effect of meeting other survivors struggling with the same problems--like hair loss, for example."
In contrast to drop-in support groups, therapeutic support groups charge a fee (which may be partly reimbursed by insurance) and require patients to make a weekly commitment for several months. Some therapeutic groups follow treatment guidelines established by Stanford University psychiatrist David Spiegel. In a study of 86 breast cancer patients 10 years ago, Spiegel found that women who participated in therapeutic support groups lived an average of 18 months longer than those who did not.
Last winter, Karen Weihs, a psychiatrist affiliated with the GW Cancer Center, started the Washington area's first therapeutic support group based on Spiegel's model. While the scientific evidence that such groups prolong survival is "still preliminary," Weihs called Spiegel's findings "very powerful" and said follow-up studies are underway.
Richard Suinn, former president of the American Psychological Association (APA), believes that new research on the effectiveness of therapy highlights the need for psychologists to play a greater role in cancer treatment. According to Suinn, psychologists can help cancer patients in four areas: coping with their initial reaction to diagnosis; communicating with family, friends and doctors; pain management; and stress reduction.
"Oncology involves more than treating a pure physiological process like a broken bone," he says.
Suinn chose outreach to cancer patients as the APA's main initiative last year. He has edited two APA books on psychology and cancer and hopes to publish a directory of specialists in the psychology of cancer, to make it easier for patients to track down therapists.
"Cancer is a growth, not a growth experience," a cancer survivor once told GW social worker Lincoln. Yet with support and access to mental health treatment when necessary, Lincoln says, survivors can successfully tackle all the challenges imposed by the disease.
"Even that patient would admit it's life-transforming, with good and bad aspects."
* To obtain a list of support groups in the Washington area, contact the Greater Washington Coalition for Cancer Survivors, 4848 Albemarle St. NW, Washington, DC 20016-4347. Phone: 202-364-6422. Web site: www.gwccs.org.
* National Coalition for Cancer Survivorship. Phone: 301-650-9127. Web site: www.cansearch.org.
* Cancer Information Service of the National Cancer Institute (NCI). Phone: 1-800-4CANCER (1-800-422-6237).
* The NCI's Office of Cancer Survivorship (OCS) offers a guide for survivors called "Facing Forward" on its Web site, cancernet.nci.nih.gov/OCS.