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.
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.
And Johns Hopkins is doing just that with a pioneering program called Women At Risk for Malignancy (WARM).
The WARM program was established within the Johns Hopkins Oncology Center to provide multidisciplinary support to long-term cancer survivors—as well as those at increased risk because of family history, genetic screening or other factors. It was developed by a diverse team of gynecologists, surgeons, oncologists, nurse practitioners, genetic counselors and actual breast cancer survivors.
"Currently, female survivors of cancer are usually followed by their surgeon or oncologist for three to five years," says Dr. F.J. Montz, the Director of the WARM program at the Johns Hopkins Oncology Center.
"A woman is then often considered a ‘survivor’ of cancer and referred back to her gynecologist or internist for routine care. Many, however, continue to feel a need for special attention that some primary care providers simply cannot provide."
A perfect example, Montz points out, concerns hormone replacement therapy (HRT), which poses both unique risks and benefits for long-term cancer survivors.
HRT can significantly reduce a woman’s risk of osteoporosis and heart disease. And yet, exposure to hormones is thought to increase a woman’s risk of developing breast cancer. Some important new studies appear to indicate that using only estrogen in hormone replacement therapy is okay, but adding progesterone to the mix is not. Therefore it may be possible to balance the risk of cancer recurrence with the need for hormonal support after menopause.
Such a balance of risk and quality of life must be carefully weighed by clinicians with access to the most current medical research. "Such knowledge can have important implications for the long-term cancer survivor," adds Montz.
Beyond such physical concerns for the cancer survivor, the constant fear of cancer returning can be emotionally debilitating as well. And yet this important aspect of the recovery process has long been overlooked.
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.
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:
Johns Hopkins Kelly Gynecologic Oncology Service (http://womenshealth.jhmi.edu/gynonc/)
The Johns Hopkins Breast Center (http://www.hopkinsbreastcenter.org/)
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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