Nurses Urge Congress to Fund More Cancer Pain Research

WASHINGTON—Congress should increase funding for research to find more effective ways to counter the symptoms of cancer and its treatments, including the common debilitating problems of pain and nausea and vomiting.

Several members of the Oncology Nursing Society (ONS) delivered this message at a congressional briefing sponsored by the National Coalition for Cancer Research. “The potential for effective management of symptoms is tremendous,” said ONS president Pamela J. Haylock, RN. “But funding will determine what we can really accomplish.”

Quality of Life Issues

Cancer patients suffer a variety of symptoms from their disease and its treatment, noted Kathi H. Mooney, RN, PhD, professor of oncology nursing at the University of Utah. Common symptoms include fatigue, pain, infection, nausea and vomiting, mouth sores, weight loss, difficulty eating, hair loss, sleep disturbances, and peripheral neuropathy. Symptoms are multidimensional and difficult to measure, she added.

A Cancer Pain Patient Speaks

In his testimony at a congressional briefing, Marc Feldman, a professor at the University of Maryland School of Law, Baltimore, emphasized the need for more research on cancer pain with a description of his own experiences since surgery for glioblastoma last summer.

“Pain has been, is, and is likely to be the defining feature of my life,” he said. “While there are times when my pain is mild, there are also times when I am reduced to absolute desperation—desperation and discouragement of an intensity I have never known in my life.

“My hopefulness that medication will lead to relief hangs by a slender thread. Instead, there is nausea, disappointment, and continuing pain.”

“Some symptoms are life-threatening, such as some infections; others are threatening to the quality of life,” Dr. Mooney said. Overall, they can extract an enormous physical and psychological toll from patients. “We need more research so we don’t have to focus on suicide as the option to living with cancer at the end of life,” she added.

Fatigue is commonplace among cancer patients—ranging from 72% to 95% of patients in various studies—and is often chronic, with some patients continuing to experience fatigue for years.

“It’s a long-term survivor issue,” Dr. Mooney added. “We don’t know how to prevent fatigue.” Unfortunately, the underlying cause of this debilitating cancer symptom often remains unknown, although theories to explain it do exist. Still, “if you don’t understand the mechanism, it is very hard to come up with an effective intervention,” she noted.

When the cause of fatigue is known, such as anemia, treatments are available, but can be expensive. “One of our concerns is that formularies of health plans may restrict treatment for fatigue even for important, appropriate care,” Dr. Mooney said.

Nausea and vomiting, frequent and dreaded companions of cancer therapies, causes enormous distress in patients. “It has become a major issue in patients’ willingness to continue treatment,” Dr. Mooney said. “People are so adversely conditioned to the nausea and vomiting during the first few rounds of therapy that they really question whether or not they can continue month 4, month 5, month 6.”

Until about 10 years ago, little could be done to quell the problem. But now, as the result of understanding the role of serotonin released in the GI tract, some effective antinausea medications are available. “They are more expensive, and in some cases they have been eliminated from formularies, or restricted, in favor of less expensive, and less effective, antinausea drugs,” Dr. Mooney said.

Nausea and vomiting remain a very important problem to study. The acute form occurs within the first 24 hours of treatment, and the serotonin antagonists are the most effective means of countering it. The delayed form occurs 3 to 4 days after therapy. It is assumed to have a causal mechanism different from serotonin release, and “we don’t have optimal therapy yet,” she said.

Dr. Mooney also noted that, while some studies show mild effectiveness of smoking marijuana in easing nausea and vomiting, the plant and its active ingredients have not been tested in comparative studies against serotonin antagonists. “It is unlikely they are as effective as the serotonin antagonists,” she said. “I don’t think it is going to make a dramatic difference, although it might help some subpopulations.”

Peripheral neuropathy, primarily related to the use of neurotoxic chemotherapy drugs, can severely affect quality of life. And yet this symptom, although well studied in diabetics, has received little attention in cancer patients. “Unfortunately, the way we know how to prevent it is not to give neurotoxic chemotherapy,” Dr. Mooney said. “That doesn’t seem at this point to be an acceptable conclusion.”

The Pain Problem

Cancer patients can develop pain at any time, emphasized Vivian R. Sheidler, RN, MS, a neuro-oncology clinical nurse specialist at the Johns Hopkins Oncology Center. For many cancer pain patients, pain problems can be eased with medications, radiation therapy, nerve blocks, and nondrug treatments such as heat, cold, and massage.

“But the scientific evidence in cancer patients—to tell us which are the best treatments, which ones cause the fewest side effects, what order to use them in, what to do when a treatment no longer works—is not as strong as it needs to be,” Ms. Sheidler said. “A large percentage of pain management practice that we do is based on clinical judgment rather than research.”

Symptom prevention and control remains a major issue for patients that deserves far more research attention, Ms. Sheidler and her colleagues told the congressional briefing.

“We need to look at the cost and the impact of cancer patients’ unrelieved symptoms and understand the hidden cost,” Dr. Mooney said. “It is not just that we need to cure cancer, but that we need to treat the symptom experience that goes with cancer.”