GAINESVILLE, Fla. -- Patients who hear the dreaded words "you have cancer" invariably look forward to the day the doctor tells them "you're cured." But University of Florida researchers say survival often comes at its own price -- the mind may need mending even after the body heals.
A national study of cancer patients who underwent bone marrow transplantation reveals cancer diagnosis and treatment has a profound and lasting emotional and physical impact that can persist for decades. In fact, many cancer survivors report lingering sleep and sexual problems, pain, cognitive problems and generally poor physical well-being relative to their healthy peers, said John Wingard, M.D., director of the blood and marrow transplant program and deputy director of the UF Shands Cancer Center for the Gainesville campus.
The study was the largest to date to assess long-term quality of life issues among these patients.
"A cure is not necessarily synonymous with total resumption of good health," Wingard said.
Many patients suffer physical complications, such as infections or toxicity from intensive chemotherapy and radiation treatment, he said. And both the patient and the family must often travel to specialized tertiary care centers distant from the home, requiring them to establish a temporary residence for a number of weeks or even months. Their work is disrupted, and they frequently face financial challenges and high health-care costs.
"All of this occurs in the setting of a considerable amount of anxiety about whether the transplant is going to be successful, whether the cancer is going to be controlled, and whether potentially lethal complications will occur during therapy," Wingard said. "The individual and the family are subjected to a pressure cooker of emotions and challenges they need to face."
The findings, published in the Journal of Clinical Oncology, highlight the need for doctors to help their patients cope with the often traumatic experience of fighting cancer and the stresses they live with in its aftermath, Wingard said.
Each year, an estimated 30,000 Americans undergo a bone marrow or peripheral blood stem cell transplant, typically a procedures of last resort. Both types of transplantation aim to restore patients' blood stem cell counts after their own stem cells have been wiped out by high-dose chemotherapy or radiation therapy used to treat cancer. After they are infused into the bloodstream, stem cells take up residence in the bone marrow, where they give rise to the immune system's infection-fighting white blood cells, red blood cells or platelets. Worldwide, about 100,000 people who have undergone a successful transplant are alive, and the number of long-term survivors grows daily.
The study involved 662 patients treated at 40 transplant centers who had breast cancer, acute or chronic leukemia, or lymphoma -- among the most common indications for transplantation. Researchers at UF, Northwestern University, the University of Kentucky and the Medical College of Wisconsin interviewed participants by telephone and asked them to describe their quality of life. The patients also completed a series of standardized questionnaires that evaluated their physical health, whether they were depressed or anxious or had other mental health problems, the quality of the support they received from friends and family, and whether they had pain, sleep or sexual problems, fatigue or other ailments. They also were asked about their perceived spiritual well-being. A comparison group of 158 healthy peers completed a similar battery of questionnaires and telephone interviews.
UF researchers found cancer survivors reported large differences in measures of general health, physical function and well-being, depression, cognitive function and fatigue. For example, approximately 30 percent of survivors reported experiencing a constellation of severe symptoms that practitioners commonly consider the basis for a clinical diagnosis of depression. In contrast, only 8 percent of healthy matched controls reported such symptoms. On average, patients were evaluated seven years after transplantation, but some reported deficits that persisted for 20 years.
Others described the post-cancer phase as a time of psychological and interpersonal growth. Researchers say that's because merely surviving puts some problems in perspective. These patients reported the experience strengthened relationships, renewed their appreciation for life, reordered priorities, increased empathy and deepened spirituality.
"One unique facet of this study was that it also looked at good that came out of facing a life-threatening illness," Wingard said. "What we found was that a number of the survivors reported psychological growth and that this positive finding might have leavened some of the losses they experienced. For that reason, many of them, when balancing positives and negatives, felt that their life was better. Some pursued a new career, others found strength in renewing relationships with spouses, family and friends, reassessing what was important to them in life."
Wingard said the study emphasizes the need for physicians to remember that providing emotional support and teaching patients and their families coping skills are often as important as focusing on fixing physical problems. Practitioners also must work on identifying at-risk patients and families who may need extra attention from the health-care team.
UF researchers are continuing to study threats to patients' sense of well-being and are evaluating their data further to better characterize factors associated with positive health outcomes. Eventually they hope to identify and test ways to help them cope after cancer, boosting quality of life for all involved. That might include something as simple as encouraging patients to periodically write down their deepest thoughts and feelings about their experience as a way to reduce stress and alleviate related symptoms.
The bottom line? "Cure is not the end of the journey," Wingard said. "Survivors continue to travel down the road revisiting some of the experiences they had perhaps months, even years, later. It's important for all of us as family members and friends to be aware of that and to be supportive of individuals who have undergone very traumatic experiences involving their health. Long after a cure is achieved, there may be issues, including stress and depression, that may linger and that still require medical attention."
Despite the vast resources applied in pursuit of a biologic cure -- the elimination of cancer -- much less attention has been devoted to survivorship issues, including ways to help people resume their lives after successful cancer treatment, said Stephanie Lee, M.D., an assistant professor of medicine at the Dana-Farber/Harvard Cancer Institute in Boston. Physicians have routinely monitored their patients for disease recurrence, she said, but studies suggest they are less skilled at identifying and dealing with late physical complications and emotional or adjustment difficulties.
"The ultimate goal should not only be eradication of cancer, but doing so in a way that leaves no physical, emotional or social complications behind, or at least minimizes them," Lee said. "Dr. Wingard's research confirms what many cancer survivors say: A brush with death may enhance appreciation for life by helping people figure out what is truly important. But this greater appreciation for life may also act as a barrier, or a subtle disincentive, to looking for ways to improve deficits in quality of life. Recognition of these deficits is the first step toward trying to improve things."
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