DIANA SLOAN ​​had taken pain medication before. After her stage IV rectal cancer diagnosis in 2012, she had undergone several surgeries, including two colon operations and removal of her gallbladder and the entire right lobe of her liver. Percocet (oxycodone/acetaminophen) was the pain medication she was typically prescribed following these surgeries.

It wasn’t until early 2020, after tumors in her right lung started cutting off the organ’s blood supply and leading to painful tissue death, that the 45-year-old mother of three required chronic pain medication to function daily. Sloan’s oncologist recommended taking extended-release morphine tablets. But first, Sloan had to sign a contract promising not to abuse the medication or give it to others. Being required to sign the contract, she says, felt like an indignity.

“I am not trying to take advantage,” says the Slingerlands, New York, resident. “I am not trying to abuse anything. I am just trying to live my life as close to pain-free as I can be.”

With heightened national awareness of the opioid crisis, some cancer physicians and patient advocates believe regulations and recommended limits on prescribing opioids have unduly punished cancer survivors and those in treatment like Sloan. In a 2019 letter to federal officials, leaders of the American Society of Clinical Oncology (ASCO) and other physician groups expressed concern that opioid prescribing guidelines published in 2016 that recommended limits on doses and duration were being incorrectly applied to cancer patients and survivors.

Still, recent studies reveal that individuals with a history of cancer are not immune to falling into worrisome patterns. Physicians treating cancer patients are left trying to balance a legitimate need for pain relief with a desire to avoid opioid misuse or dependence by patients. As greater numbers of cancer patients join the ranks of survivors, more doctors and patients will face this dilemma, says Alison Wakoff Loren, an oncologist and hematologist at the Hospital of the University of Pennsylvania in Philadelphia.

“If it’s a cancer patient who could be expected to live for several years, it’s really important not to create other problems for her while you’re taking care of her disease,” says Loren, who wrote a piece published Dec. 27, 2018, in the New England Journal of Medicine about one of her leukemia patients developing opioid use disorder.

Vital Use or Potential Misuse?

In its guidelines for managing chronic pain in cancer survivors, ASCO lists roughly three dozen potential culprits for pain, among them lymphedema, peripheral neuropathy and post-surgical pelvic floor pain. Some Americans might already be taking an opioid before their cancer diagnosis, says Judith Paice, who directs the cancer pain program at the Northwestern University Feinberg School of Medicine in Chicago and is the lead author on ASCO’s chronic pain guidelines.

Nearly 35% of cancer survivors report chronic pain, and 16% describe it as painful enough to curtail their ability to work or perform other activities on at least most days, according to an analysis published in the August 2019 issue of JAMA Oncology​. Moreover, the percentage of survivors reporting pain didn’t change significantly whether they were a few years out from their diagnosis or a decade or more beyond it, the researchers found.

“We were expecting that the pain would start to come down a little bit after five years or even 10 years after cancer diagnosis,” says lead author Changchuan Jiang, an internal medicine resident at Mount Sinai Health System in New York City. “But the data just tells us a different story.”

Research presented online May 7, 2020, in JAMA Oncology looked at a decade of death records and found some encouraging news concerning cancer patients’ opioid vulnerability. Overall, those in the general population who took opioids were 10 times more likely to die of an overdose than cancer patients taking the drugs. But several other recent studies indicate that a history of cancer doesn’t grant immunity from opioid misuse or dependence.

One analysis of 68,463 patients who underwent surgery for their cancer—believed to be caught early enough to cure—found that 10.4% of these patients continued to fill prescriptions a year later at daily doses of roughly six tablets of 5-milligram hydrocodone. That dose is similar to what chronic opioid users take, says Lesly Dossett, a surgical oncologist at Michigan Medicine in Ann Arbor and senior author on the study, published in 2017 in the Journal of Clinical Oncology.

“From a surgical perspective, their postoperative pain should have resolved by then,” Dossett says. “There’s concern about why they’re continuing to fill opioid prescriptions that far out.”

Another study, published in the April 2020 issue of JAMA Oncology, looked at urine drug testing in 300 cancer patients and also flagged some troubling patterns. Of the 88 patients who were targeted for testing due to clinical suspicions, 43% had a result consistent with nonmedical opioid use. But so did 28% of the 212 patients who were randomly tested. The abnormal findings indicating nonmedical use included the presence of other opioids or illicit drugs, or the prescribed opioid not being present in the urine, a sign that the patient might be diverting it to someone else, says oncologist Eduardo Bruera, a study author who chairs the department of palliative, rehabilitation and integrative medicine at the University of Texas MD Anderson Cancer Center in Houston.

“Our findings suggest that the frequency of abnormal results is high enough that we should consider doing regular random [urine] testing,” he says, similar to the approach used in pain medicine clinics.

Balancing Risks and Benefits

Still, many physicians are striving to find the right balance between not shortchanging pain relief while still minimizing longer-term risk. Sometimes, the balance can tip away from pain relief and toward a cautious approach. A survey conducted in 2019 by the American Cancer Society (ACS) Cancer Action Network, an advocacy group affiliated with the ACS, found that slightly more than 40% of 1,111 cancer patients and survivors surveyed reported at least some challenges in obtaining or filling their opioid prescriptions, including additional trips to the doctor or pharmacy, uncontrolled pain requiring an emergency room visit, or embarrassment in front of clinicians or bystanders.

Heather Samis, who is in remission from stage IV ovarian cancer, still recalls her 2018 encounter with a pharmacy technician during one of the few times she’s taken an opioid at a time other than following surgery. At her radiation oncologist’s insistence, she took a prescription for Percocet into her regular pharmacy near Ocean City, Maryland. The technician, who recognized Samis, told her that the regulations had changed, and she needed to know Samis’ diagnosis and why the opioid was required. Samis says the technician seemed uncomfortable asking and became more so when Samis explained how radiation treatments to the groin area had badly blistered the skin on her inner thighs.

“I just felt like it was ridiculous,” says Samis, now 43. “I could see if I was there trying to get a prescription for similar medications filled all of the time.”

Once someone has been diagnosed with cancer, the two side effects they most fear are nausea and pain, says Barbara McAneny, an oncologist and CEO of the New Mexico Cancer Center in Albuquerque. Keeping patients comfortable, which she notes does not always mean pain-free, as that might not be feasible, has become more difficult amid the opioid crisis.

“I am not minimizing opioid use disorder,” McAneny says. “I’m just saying that we don’t need to swing the pendulum so far away from opioids that we punish people who truly need them.”

One challenge for oncologists is that primary care doctors have backed away from prescribing opioids at all, sometimes leaving oncologists to manage noncancer pain, Paice says. She points to a study published in the July 2019, issue of JAMA Network Open that found nearly 41% of Michigan primary care clinics declined to accept new patients who were already taking opioids. Another challenge is that a patient’s pain complaint might be a vital warning sign, she says.

“Today’s survivor may be somebody with a recurrence in the future or with a secondary malignancy,” Paice says. “So we’re always trying to assess, ‘Is this increased report of pain a reflection of the person’s emotional status or a recurrence or a new cancer?’” In ASCO’s chronic pain guidelines, Paice and her co-authors provide a series of treatment recommendations for cancer survivors who have experienced pain lasting at least three months, regardless of the cause.

Among some of their guidance: Assess the patient’s pain and risk factors for misuse of opioids. Consider if an alternative drug might work instead. For instance, a few antidepressants as well as the anti-seizure drug gabapentin might help with nerve-related pain. Common non-opioid pain relievers such as acetaminophen or nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen might not be an option, Loren notes, because they might add to the strain that treatments like chemotherapy already can exert on the liver and kidneys.

When prescribing pain medicines, cancer physicians can take precautions, such as running the patient’s name through a state database called a prescription drug monitoring program to see if they are getting opioids elsewhere, Paice says. Urine testing will reveal if the patient is taking other drugs without disclosing them, she says. These precautions “have been well described in the pain world but haven’t yet been more widely adopted in oncology,” Paice says.

Should You Be Worried?

Look for these signs you or family members are at risk fro​m opioids.​

Seeking a Good Quality of Life

Looking back, Loren acknowledges she was slow to catch on that her 24-year-old leukemia patient was misusing opioids. “It starts feeling really uncomfortable before you can name it,” she says. Loren had initially prescribed the opioids for a painful complication of her patient’s bone marrow transplant called graft-versus-host disease. As time passed, though, the woman requested refills more often, and her boyfriend reported that she was too sleepy. Once it became clear that she had become dependent, Loren’s patient resisted attempts to get into rehab. When she died suddenly, her leukemia was in remission. The cause of death wasn’t determined, but the “possibility that she may have overdosed haunts me,” Loren wrote in the New England Journal of Medicine editorial.

These days, when Loren prescribes a new opioid, she talks to the patient about the risk that it might become habit-forming and difficult to stop if taken over an extended period of time. She’ll offer other options, such as gabapentin. But she doesn’t usually order urine drug testing.

“I know I should,” she says, adding, “You feel like a parent drug testing your kid.” Building trust with patients is crucial as they weather highly risky procedures such as bone marrow transplants, she says. “Having this specter of opioid use and [substance] use disorder and screening and monitoring, it’s really hard to incorporate that into a conversation that’s already imbued with trust.”

McAneny, the Albuquerque oncologist, says that her practice checks the prescription drug monitoring program, now required for every prescription for opioids, and puts a note in the patient’s medical record if there is a worry about misusing pain medication. That way, other physicians are aware, she says, adding that it’s a step needed for fewer than 1% of the practice’s patients.

She is more concerned about patients and survivors unnecessarily suffering and even skimping on prescribed opioids. Individuals with advanced cancer might survive for years, but somewhere along the way the treatment may have painfully damaged a nerve or a bone or an organ, McAneny says. “And they deserve to have their pain controlled so that they have not only a life but a good-quality life.”

Sloan, who recently enrolled in a clinical trial​ that is analyzing the effectiveness of a targeted therapy, typically takes 30 milligrams of extended-release morphine three times a day. For years, she stubbornly resisted taking any pain medication in order to soak up every moment with her young children, who were ages 3, 5 and 13 when she was diagnosed in 2012. Now, Sloan says she has no choice if she wants to make it through a soccer game, a choir concert, or a trip to the mall to take her 10-year-old daughter to get her ears pierced.

“What I try to remind myself is that I can handle some pain,” says Sloan, who remains wary of the powerful and sometimes incapacitating medications. “I am determined not to become dependent to the point where I’m not treating any symptoms anymore [and] I’m just trying to escape.”

Charlotte Huff is a Texas-based journalist who writes about medicine, psychology and health policy.