ALICE GOLDEN was in unbearable pain after treatment for anal cancer, but didn’t realize medication was an option until a nurse suggested that she try it. - PHOTO BY: MEAGAN BOSCHERT
If you’ve been paying attention to the news lately, chances are you’ve encountered a story about America’s growing problem with opioid addiction.
According to the Centers for Disease Control and Prevention, opioids killed more than 33,000 people in the United States in 2015 — more than any year on record. What’s more, nearly half of all opioid overdose deaths involved a prescribed medication, rather than an illegal drug such as heroin. In some of these cases, opioids may have been prescribed to one person, but used by someone else.
Used properly, prescription opioids help keep pain — including that of people with cancer and survivors of the disease — under control. The drugs mimic natural endorphins by stimulating opioid receptors in the body’s nervous systems. But because they create a sense of euphoria, they can become addictive; that’s dangerous, according to the World Health Organization, because addicts need increasingly higher doses as tolerance develops in order to achieve the same effect, and by taking too much they risk respiratory arrest.
Quitting can be difficult due to withdrawal symptoms that can include fatigue, irritability, sweats, muscle aches and vomiting.
“Opioids are our greatest tool in managing pain,” says Jeannine Brant, Ph.D., APRN-CNS, AOCN, FAAN, oncology clinical nurse specialist and nurse scientist at the Billings Clinic in Billings, Montana. “But they are accompanied by risk and must be used with respect. Used cautiously, they play a tremendous role in helping people feel better.”
According to the American Society of Clinical Oncology, 40 percent of those who have survived cancer continue to experience persistent pain as a result of treatment. Yet family and friends don’t always understand the challenges long-term survivors face.
“Outside the cancer community, there’s this perception of ‘You’ve gone through cancer treatment. You should be better now,’” Brant says. “But patients can have peripheral neuropathy and syndromes that pop up later. Even among primary care physicians, there’s not much understanding. Without some expertise, patients might get treated like addicts.”
In fact, very few studies have been done to identify the proportion of survivors of cancer who take opioids, or the percentage who become addicted to the drugs.
Opioid medications — hydrocodone, to be exact — certainly helped ease Alice Golden’s cancer pain. Golden, 73, of Montana, was diagnosed with anal cancer in 2014. She was treated with chemotherapy and six weeks of radiation, beginning on Christmas Eve, to shrink her 6-centimeter tumor. By the fourth week of radiation, she says, the pain was unbearable.
“It’s a very sensitive area,” Golden says. “My doctor said my skin was going to be painful and irritated. It was like having a sunburn where you don’t want a sunburn.” Urinating and moving her bowels was so excruciating that Golden was tempted to avoid eating and drinking all together, she says. Even though her doctor told her she was likely to have pain, Golden says she wasn’t offered medicine to control it immediately. Instead, a conversation with a nurse at her radiation oncologist’s office helped her realize she didn’t need to suffer. “I’d never even thought of asking for pain medicine,” she says. But after that conversation, she asked her doctor, who prescribed 5 milligrams of hydrocodone every four hours.
It didn’t help, Golden says.
So, she did some research and asked her doctor for a higher dosage. She was increased to 10 milligrams of hydrocodone, and then, later, to 15 milligrams. Her doctor also added a 12-microgram Fentanyl patch, a more potent opioid.
That made the difference in managing her pain, according to Golden. “Thank God for the opioids,” she says, adding that, after her pain subsided, she had no problem weaning herself off the medication.
THE PROBLEM WITH PAIN
As Golden’s story shows, the problem with managing pain is that it’s incredibly personal.
Asking patients to rate their discomfort on a scale of one to 10 is helpful in determining how much pain patients perceive themselves to be in — and gives the clinician a benchmark for judging the efficacy of interventions. “The score doesn’t matter,” says Brant. “What matters is how the patient perceives the pain, as well as how the score decreases with our interventions.”
Patients with cancer and survivors may experience different types of pain. Acute pain is typically short-lived and can come on suddenly, while chronic pain is either constant or returns often, but persists for three months or longer. Breakthrough pain is sudden and intense, and can happen by itself or be related to an activity, according to the National Cancer Institute.
Treating either phenomenon appropriately requires both the patient and the clinician to understand the pain and its cycle. For example, a patient’s pain might be managed with a long-acting opioid taken orally, such as morphine, oxycodone or methadone, or a Fentanyl patch applied to the skin. But patients who experience breakthrough pain — like a patient of Brant’s with sarcoma whose pain would wake him up at night — may benefit from fast-acting opioids that bring immediate relief. These include transmucosal Fentanyl, which can be taken as a lozenge (such as Actiq), a tablet held between the cheek and the gum (such as Fentora), a tablet held under the tongue (such as Abstral) or a film placed on the inside of the cheek (such as Onsolis). Other opioids can manage breakthrough pain, but don’t act as quickly.
When she’s evaluating the best way to control pain in her patients, a focus on function drives Judith Paice, Ph.D., RN, director of the Cancer Pain Program and a research professor of medicine in the Division of Hematology-Oncology in the Feinberg School of Medicine at Chicago’s Northwestern University.
“Cancer pain, and all pain, is subjective,” Paice says. “There’s no clear imaging technique or laboratory value that tells us a person is in pain. We used to treat based on pain intensity, with the goal of getting to pain level zero. The goal now is to keep the patient functional.”
Paice says she begins pain treatment with a discussion of the patient’s goals. The goal might be to sit in a hard chair at church or synagogue, or it might be to hold a grandchild. “I ask, ‘If we did a better job of managing your pain, what could you do that you’re not able to do now?’”
An increased societal focus on the overuse of opioids and addiction, though, has led to a “re-education of all of us,” Paice says. “There are some people who expect to have zero pain, 24/7.”
A BALANCING ACT
Balancing a healthy respect for the role of opioids in managing cancer-related pain against the potential for addiction is at the heart of the difficult decisions clinicians must make. “It’s become more and more difficult for patients to get (pain) medication,” Paice says. “More primary care doctors don’t want to prescribe opioids, fewer pharmacies carry the medication and more insurance companies are requiring prior authorizations that are delaying access to medications.”
She recently led an expert panel that developed recommendations to help clinicians manage the chronic pain of cancer survivors. Those recommendations, published in the Journal of Clinical Oncology, were meant to help care teams “understand that there are significant pain syndromes that can occur, and to be aware of multimodal therapy. Managing pain is not just increasing the opioid dose; it may be adding other medications or adding non-medication therapies,” Paice says.
Non-opioid medications used to treat pain, particularly chronic pain, can include anticonvulsants such as Neurontin (gabapentin) and Lyrica (pregabalin), as well as anti-depressants like Cymbalta (duloxetine), says Brant — although a drug like Lyrica can, itself, be somewhat addictive. Sometimes helpful, too, are integrative therapies like massage and acupuncture, along with cognitive behavioral therapy, occupational therapy and physical therapy, Paice says. The new recommendations for clinicians also mention the potential benefits of hypnosis, meditation and, where access is allowed by state regulations, cannabis, an approach that still needs further study.
Restricting the use of opioids has some advantages. Opioids can have long-term effects on the body, including changes in hormones that can affect sexual function, fertility, wound health and bone health, Paice says. “The challenge is that we don’t always know which patients would benefit from opioids with the least adverse effects.”
Brant says that, when working with longterm cancer survivors, clinicians always want to make sure that the opioids they’re giving are more beneficial than harmful. In evaluating a patient’s pain — and the appropriateness of opioid medications to treat that pain — Paice says she always starts with a series of questions. During a first visit, she asks patients to describe their pain and what they’ve tried already, as well as their social history, family history and use of tobacco, alcohol and recreational drugs. And, after warning that she’s about to ask a hard question, Paice asks patients if they’ve ever been sexually abused. “Sexual abuse is one of the biggest risk factors for addiction,” she says, adding that she also asks patients if they’re worried about the possibility of addiction.
In patients who have no biologic factors predisposing them to addiction, and who ideally have no history of addiction, Paice proceeds with prescribing opioids — if appropriate. “It’s not the drug itself that makes a person an addict,” she says. “It’s how you take it and the risk factors associated with misuse.” For example, she says, it’s appropriate for patients to take an opioid for relief if they have pain when they lie on a mattress, but not simply to help them sleep at night.
Opioids might be appropriate even for those with an addiction history if they are in severe, unremitting pain. But what about those who then become addicted to opioids, or who worry that they will?
It’s important to consider a person’s individual history of addiction when evaluating whether to treat cancer pain with an opioid. “I treat many patients who have a previous or current substance use disorder,” Paice says. “I see many ‘chemical copers,’ but rarely see folks who have no addiction history but then become addicted when we give them opioids to treat their cancer pain.”
A “chemical coper” is a person who uses medications in non-prescribed ways to cope with distress. It’s not the opioid that causes abuse, but rather that the patient has risk factors for misuse.
“Everybody thinks, ‘I don’t want to get addicted,’” says Golden. She encourages patients who need opioids to manage their pain but worry about becoming addicted to talk to their doctors. “My pharmacist was also very helpful,” she says, adding that she never felt “high” from her medication and began taking less of it as her pain subsided. “Be conscious of how much you’re taking.”
Brant says it’s important for caregivers and clinicians to stay conscious of how patients with cancer are using the opioids prescribed to them. She spoke of a patient — a recovering addict — who had advanced cervical cancer spread throughout her pelvis. She was prescribed methadone to manage her pain, but soon she was running out of pills and hanging out with her old crowd.
Patients at high risk for addiction pose particular challenges, Brant says, adding that her team uses different levels of surveillance and follow-up with these patients. Red flags include running out of pills and refilling early. “We document this and ask the patient how they’re using the medication,” she says. “We tell them, ‘We’re here to help you.’”
Brant acknowledges that there are no easy answers in fighting opioid addiction.
“I worry that the knee-jerk reaction in all of this is going to lead to the under-treatment of pain,” she says. “Yet, I can’t say that addiction is not a possibility. We have to arm our practitioners with information.”