Addressing the Needs of Long-Term Survivors
An important article in the New England Journal of Medicine recently focused on the special needs of a growing population of breast cancer survivors—those who have survived the disease for up to five years after initial diagnosis, and longer.
Dr. Harold Burstein of the Dana-Farber Cancer Institute in Boston addressed many questions that primary care physicians and gynecologists are now encountering because of this growing population of long-term cancer survivors. These include concerns about fertility, managing menopause, and nutrition and lifestyle factors to minimize recurrence.
Many women diagnosed with breast cancer are still in their childbearing years, Burstein noted. Questions arise concerning their ability to get pregnant, the effects of chemotherapy on future fertility, and even what effect breast-conserving surgery may have on the ability to produce milk.
Although breast cancer diagnosis rates have remained relatively unchanged in the last decade, actual death rates from the disease have dropped dramatically since 1995. As a result, many more women are not only surviving breast cancer, but living healthy disease-free lives long after their treatment ends. Currently, more than 80 percent of women diagnosed with breast cancer can expect to survive at least five years.
Burstein called on the medical community to give more emphasis to long-term survivorship issues rather than focusing solely on immediate treatment planning.
Beyond fertility, menopause and other physical recovery issues, the constant fear of cancer returning can be emotionally debilitating as well.
A report published in the Journal of Clinical Oncology highlighted a surprising lack of recognition by oncologists of depression in their patients—not surface symptoms involving crying and mood, but rather deep-seated indicators of severe depression such as guilt, suicidal thinking, hopelessness, and inability to experience pleasure.
Often depression is temporary and accompanies the understandable emotional trauma of a cancer diagnosis and its treatment. But longer-term depression can have a profound impact on quality of life.
What doctors call "clinical depression" has a number of symptoms, including lack of interest in sex, lack of interest in things that usually give pleasure, and even not being able to feel pleasure at all. Often these feelings are associated with an inability to sleep, changes in eating habits, fatigue, trouble concentrating, and feelings of worthlessness and hopelessness.
In addition, roughly 50 percent of women who have received long-term treatment for breast and gynecologic cancers report some type of sexual dysfunction, ranging from loss of sexual desire to painful intercourse. Yet, while the physical side effects of cancer and its treatment are often cited as the obvious reasons for sexual difficulties, psychological and emotional factors can be just as important. These can include depression, confusion, anxiety, guilt, stress cause by the diagnosis of cancer, and changes in an individual’s body image following surgery and treatment.
A recent article published in the journal Research in Nursing Health evaluated a group of 98 African-American women who had survived breast cancer for an average of 4 years after their initial diagnosis. Researchers led by Prof. Laurel Northouse of the University of Michigan sought to understand what factors affected their long-term quality of life.
Northouse’s team found that those women who viewed themselves as "survivors" and also maintained strong family relationships were able to remain optimistic and maintain a high quality of life years after they were first diagnosed with the disease. Interestingly, they found that age, education, marital status, and income did not significantly relate to quality of life.
Many of the women in the study expressed concerns about how their disease was affecting their children and other family members. "It appears that as these other concerns in women’s lives increased, they were more likely to view their illness as stressful, which then indirectly affected their own quality of life," the researchers suggested.
In another study, researchers found that breast cancer survivors who feel they have some control over their follow-up care have a better quality of life than those who lack this sense of control.
Drs. M. Robyn Andersen and Nicole Urban of the Fred Hutchinson Cancer Research Center in Seattle interviewed 292 women who had survived breast cancer and been free of recurrence for at least 3 years. Their report was published in the Annals of Behavioral Medicine.
Overall, 90% of the women reported that they continued to get annual follow-up care, and 56% reported that they continued to get tests for recurrence, such as blood tests, bone scans, chest x-rays and clinical breast exams.
About half of the women reported that they had been involved in making decisions about their original treatment, and about the same number said they were involved in making decisions about tests for recurrence.
Andersen and Urban found that involvement in decisions about initial treatment was unrelated to later quality of life. However, ongoing involvement in decisions about follow-up care, specifically in regard to testing for recurrence, was significantly related to quality of life (as measured by level of pain, general health, vitality, physical and emotional functioning, and mental health).
"Cancer diagnosis and treatment are traumatic and important life events," stated Andersen in a news release. "Involvement in decision-making helps women to deal with the traumas, and the influence continues long after cancer treatment ends."
SOURCES:
New England Journal of Medicine, December 12, 2000; 343:15:1086-1094
Journal of Clinical Oncology, 1998; Vol. 16, No. 4, 1594-1600
Journal of Clinical Oncology, 2000; Vol. 18, No. 4, 743-753
Research in Nursing and Health, December 1999; 22:449-460
Annals of Behavioral Medicine, November 1999
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