April 19, 2012 -- "The burning in the lungs was the worst part, and there's not much that you can do for that."
Sixty-year-old Johnie Bennett of Newhall, Calif., was diagnosed with lung cancer about a year and a half ago. The disease not only threatened her life, but it meant that she was in constant pain. Bennett said she coughed so much that she broke numerous ribs.
"It does become tedious," she said of her efforts to control her pain. "It becomes a job -- one that you resent."
And then there were the pills.
"It was one pill after another," she said. "I think I had 30 bottles at one point."
While her pain was considerable, Bennett said she hesitated to use all of the drugs for fear of becoming addicted.
Bennett's story is far from uncommon. As many as one-third of cancer patients may be receiving inadequate treatment to control their pain, even though many medicines are available to help, new research suggests.
Pain is one of the most-feared and worst symptoms of cancer. As disease progresses, pain can become completely debilitating for cancer patients.
Dr. Michael Fisch lead author and chair of the department of general oncology at MD Anderson Cancer Center in Houston, said he undertook the study to get a better grasp on how many cancer patients need pain control and assess the current methods..
"We didn't understand enough about how people are being treated," he said.
In the largest U.S. study of its kind to date, Fisch and his colleagues looked at more than 3,000 patients for over a month who suffered from invasive cancerous tumors of the breast, prostate, lung, colon or rectum.
The patients, who were undergoing treatment at 38 different medical institutions, completed a 25-question survey, and researchers recorded the medications they were taking.
The researchers then determined the adequacy of the patients' pain management using a scale that compared the patient's symptoms of pain to the strength of medication they were taking.
At the start of the study, two-thirds of patients required medication to manage their pain. The researchers found that of these patients, one-third were taking insufficient medications to control the pain they were experiencing.
Thirty days later, when they repeated the questionnaire and examination of the patients' medications, the situation had not improved; the percentage of patients who reported that their pain was undertreated was roughly the same.
"Past studies just looked at one snippet in time, so we wanted to see if improvements are made once the patient has good follow-up," says Fisch. "This shows there is still work to be done,"
Surprisingly, physicians in the study were aware of the problem; in fact, for decades, doctors across the country have been aware that undertreated pain among cancer patients is a problem that needs to be addressed.
Why is cancer pain so difficult to control?
Given the constantly changing and progressing symptoms of cancer, doctors say that managing the associated pain can be difficult. What may be successful pain management for a cancer patient on one day may not suffice the next. Or the medication could become more than needed.
In the study, about 30 percent of the patients who were initially undertreated did gain control of their pain over the month-long study. But 10 percent of the patients who were originally treated appropriately lost control over their pain by the follow-up visit.
"There is this rollercoaster of cancer pain," says Dr. Paul A. Glare, chief of the pain and palliative care service at Memorial Sloan-Kettering Cancer Center in New York. "People will often present with pain. Initially it gets treated, or their disease is cured, so it gets better. But then if it recurs or the disease worsens, it starts escalating again."
Another problem that doctors face is objectively determining how much pain a patient is actually experiencing. The commonly asked pain assessment question -- "What is your pain on a scale of one to ten?" -- often does not paint a complete picture, doctors say.
Fatigue, sleep problems, nausea, and weakness are just a few of the more subtle symptoms of pain. In this study, researchers not only asked the patients how much pain they had, but also whether they were experiencing these other symptoms.
If patients and their physicians don't recognize these patterns as related to pain, the researchers suggest, they may not get the pain medicine they need.
Reasons for Inadequate Pain Control Are Many, Doctors Say
Doctors in the study also appeared less likely to treat the pain of patients whose disease was considered mild or in remission, or if they were not undergoing chemo, radiation or surgery.
Fisch explains that the best and most aggressive pain management is usually delivered when the patient is visibly ill. Once the intervention is complete, pain management often falls by the wayside.
"Oncologists did well treating the sick cancer patient, but once the patient appeared to be doing better, that's when they were at the biggest risk to be undertreated," Fisch says.
But even when pain is apparent, heavy-duty pain drugs are not without a surplus of side effects -- a fact that can give both doctors and patients pause.
"Often you can't get away without taking a laxative to prevent constipation, or anti-nausea medicines to prevent that side effect," explains Glare. "People also worry if they can safely drive or use machinery at work." Some patients may out right refuse the medications for these reasons, others may take the prescription but never fill it out of fear of these side effects.
Insurance rules can also be an obstacle to connecting patients with the right medications. Glare says a lot of time is wasted getting prior authorization from insurance companies.
"In New York State for patients on Medicare, there is a very restricted list of pain medicines available without prior authorization," he said.
Other doctors say society's negative view of certain types of pain medications creates a major problem. Fears of overdose, overuse and addiction can make a patient hesitant to accept more powerful medications and doses.
"The current environment is more worried about the illegal use of controlled substances than the appropriate use," says Dr. Pam Kedziera, clinical manager for the pain and palliative program at Fox Chase Cancer Center in Philadelphia.
For Bennett, who says that she was at the lowest point of her life during the worst of her cancer pain, lifestyle changes including exercise, working with a nutritionist, acupuncture and meditation ultimately helped her take control of her pain.
"I started exercising, in small amounts, of course only 5 or 10 minutes at a time," she says. "I also used Tai Chi, which is good because it requires very little movement and more about breathing."
Based on her experience, she says she believes efforts to control cancer pain are misdirected and that others could experience more relief if exercise, nutrition and relaxation were "prescribed" along with the usual pills.
"The number one thing that keeps you out of pain is a positive attitude," she says. "It may sound like you are lying to yourself, but you find that it really brings you back to life."