By Pat Anson, PNN Editor

Over the years, we’ve received many complaints from cancer patients about their pain being poorly treated or even left untreated. Although the CDC’s opioid guideline specifically says it is “not intended for patients undergoing active cancer treatment,” some doctors take the recommendations so seriously they won’t prescribe opioids to cancer patients, fearing it could lead to abuse and addiction.

“Just last week my 90-year-old mother, who is a cancer patient going through chemo, was accused of having opioid use disorder when she went to the emergency room with a painful bacterial infection. She was left with no pain relief, even though she is a compliant patient with no history of abuse,” one reader told PNN.

“I suffer from severe stage 4 cancer pain that has gotten worse and worse and may be terminal. Despite my increasing pain, no one will increase my dosages directly due to the CDC,” another reader told us.

“I have struggled to find a doctor to treat my pain,” a patient with terminal stage 4 lung cancer said. “I am in total shock that cancer patients have to suffer like this. These guidelines have terrified doctors. If they’re too scared to treat cancer pain, what pain will they treat?”

After hearing stories like those, it was startling to read the results of a small study in the journal Cancer that found some cancer patients were so traumatized by opioid hysteria they were reluctant to take opioids because of the stigma associated with their use. Researchers at the Dana-Faber Cancer Institute in Boston interviewed 26 patients with advanced cancer and found that many were fearful of using opioids — even though the risk of opioid addiction and overdose is low for cancer patients.

“Patients consistently described the negative impact of the opioid epidemic on their ability to self-manage pain. Negative media coverage and personal experiences with the epidemic promoted stigma, fear, and guilt surrounding opioid use. As a result, many patients delayed initiating opioids and often viewed their decision to take opioids as a moral failure,” wrote lead author Desiree Azizoddin, PsyD.

“Patients frequently managed this internal conflict through opioid-restricting behaviors (eg, skipping or taking lower doses). Stigma also impeded patient-clinician communication; patients often avoided discussing opioids or purposely conveyed underusing them to avoid being labeled a ‘pill seeker.’”

Adding to the stigma, researchers said several patients ran into “logistical complications” with pharmacies and insurers when they tried to get an opioid prescription filled.

“Patients experienced structural barriers to obtaining opioids such as prior authorizations, delays in refills, or being questioned by pharmacists about their opioid use. Barriers were stressful, amplified stigma, interfered with pain control, and reinforced ambivalence about opioids,” they said.

Reports of opioid hysteria affecting cancer care are not new. In 2019, the Cancer Action Network said there was “a significant increase in cancer patients and survivors being unable to access their opioid prescriptions.”

That same year, the CDC issued a long-awaited acknowledgement that the “misapplication” of the 2016 guideline had been harmful to pain patients, including those being treated for cancer. The agency said it would evaluate the impact of the guideline and make changes “when new evidence is available.”   

Five years after the guideline’s release, cancer patients are still waiting for those changes to be made.

“I had breast cancer twice and suffer severe chest wall and referred pain from surgery and radiation treatments, plus severe spine damage, but have been denied pain treatment. This has become a crime against humanity which would never be allowed in any other country,” a cancer survivor told us.