History is repeating itself. Twenty years ago, a pain management crisis existed. As many as 70 percent of cancer patients in treatment at that time, or in end-of-life care, experienced unalleviated pain. Identified as a major medical problem, poor pain management became synonymous with poor medical care. In fact, prescribing adequate pain medication became mandatory for hospital accreditation.

The medications used to treat moderate to severe pain among people with cancer are the same opioids helping fuel today’s opioid crisis. Though it has turned a much-needed spotlight on the overprescription of these medications, it is overshadowing their underprescription among people who really need them, especially those with cancer. Two-thirds of individuals with metastatic cancer and more than half of those being treated for cancer report experiencing chronic pain, and 1 in 3 cancer patients do not receive medication appropriate for the intensity of their pain.

To get a sense of how people living with cancer are being treated for pain at a time when there is a growing stigma associated with opioid use, we reviewed 140 public posts on Inspire, the health social network we work for, written by 100 people with cancer and their caregivers. Although the writers spanned many cancer types, they primarily represented lung, bladder, and advanced breast cancer. In general, they described facing stigma from both health care providers and society in general.

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Some writers said their doctors now hesitate to prescribe opioids due to concerns over addiction. Restrictions on refills and their timing are barriers to consistent use of medications to treat pain. Many of the writers said they felt they were being treated like drug seekers when their pain needs are real and management is necessary. Their experiences with access were described as: “makes me feel like a druggie,” “I use a very low dose,” “treated like a pill seeker,” and “I am not part of the oxycodone EPIDEMIC.”

One individual wrote, “I have been made to feel like a criminal – from my doctor’s office…to the pharmacy worker who said very loudly to other patients in line that I was sure taking a lot of opioids. I was humiliated. I have been afraid to ask for pain relief as it seems like I am doing something wrong. During my cancer journey, I had to have a hysterectomy without pain relief…Hospitals feel they are opening the door to opiate abuses and my surgeon would not authorize pain medicine. I am terrified right now to ask for a refill on my pain medication.”

While the stigma from health care providers can affect cancer patients’ access to pain medications, it is the stigma from society that affects their use. Many writers indicated that they feared becoming addicts and worried about withdrawal symptoms. They also offered concerns about what use of high doses or multiple daily pain pills says about them.

These misperceptions aren’t alleviated by what patients are learning about opioids. Varied messaging about addiction and dependence from the media, government, and even health care providers seems to be leading to confusion and misunderstanding among cancer patients. Some of the Inspire writers said that health care providers had told them that cancer patients who need increasing doses are addicted; others wrote that their providers said they cannot become addicted because they “don’t get high.” Some providers say those who need increasing doses are addicted, while others say it means they are becoming tolerant or dependent on drugs. These contradictory views leave patients unsure, with many of them opting to live with pain rather than risk addiction.

We read several posts indicating that fear of addiction is causing family caregivers to withhold prescribed pain medications from those they are caring for. Responses to these posts advised against doing that, offering the opinion that managing pain is more important than addiction. While caregivers take this advice seriously and often follow up with a physician, we don’t know what they finally decide to do.

Some of the posts advocated for proper, controlled pain management, arguing that stigma should not interfere with care decisions. Their basic message to other group members is: “Don’t feel guilty for taking pain medication.” They recommend seeking out clinics and teams with expertise in pain management, cautioning that oncologists may excel in their treatment of cancer but are not necessarily knowledgeable about treating cancer-related pain.

Inspire members who wrote that they are not feeling stigmatized expressed confidence in their opioid use, derived from having knowledgeable pain management physicians who are not only experts in the field but who take time to explain pain management strategies and who include patients in decision making. These patients feel they are part of a team that is both instructive and supportive, and experience fewer struggles with access or worries about how to take their medications.

Two decades ago, the medical community woke up to the fact that far too many people with cancer weren’t being properly treated for their pain, sparking a movement to improve pain control that may have helped give rise to the epidemic of opioid misuse now affecting the country. In addressing this problem, the pendulum has swung too far, attaching a stigma to using opioids for legitimate reasons. While individuals treated in pain management clinics or by physicians specializing in pain management may be inoculated against or protected from this stigma, not everyone with cancer has access to these professionals.

What can be done? Education and clear messaging seem to be key. Pharmacists, oncologists, family practitioners, and other clinicians who care for people with cancer need better education about pain management. So do patients with cancer and their caregivers. Pain management awareness campaigns aimed at both patients and physicians could help counteract the stigma and encourage practices that do not hinder legitimate access or use.

People with cancer who need medication to control their pain are getting lost in the middle. They need support, not stigma.

Sara Ray is senior director of research at Inspire, where Kathleen Hoffman is senior health researcher and writer.

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  • I read this article looking for answers. My oncologist is threatening to take away my oxycodone. I take 5mg tablets every 4 to 6 hours, or as needed, and I stick within that 99% of the time. They don’t get me high. The pills do their job. I rarely sleep longer than 4 hours at a time because when the pain meds wear off there’s no way I can possibly sleep. I’m seriously frightened about living in pain and can see how people have gone to illegal and dangerous drugs to stop their pain.

    I’m currently going to run out of my prescription on the day before Thanksgiving, and my doctor says I can’t have my next prescription until December 5th when I get my next chemo.

    I don’t know what I’m going to do for 8 days! I’m afraid to call my doctor because of her ambiguous threats to “try” different pain solutions. Frankly, this works 100% every time, and costs me less than a dollar a day.

    I’m seriously at a loss…

  • I am experiencing acute post operative pain from lung cancer surgery now, for a month. I have been denied dilaudid, told to meditate, that I am anxious, that everything is fine, to take advil and Tylenol. I have practically begged the doctors for the necessary medication that would help me, but they deny me repeatedly. Along with having cancer three times, it is as if I am punished for being in pain. I hope so much that this stops soon, and that they stop punishing people in genuine pain. I cannot handle this much longer.

  • After watching both parents die of cancer, I have a deep ingrained fear that I, too, may someday receive this diagnosis. Let me tell you what I know: cancer HURTS. In big letters. It is easy to rubber stamp your self-righteous ability to play God over the lives of others if you are doing so behind a desk or at a board meeting, while smuggly sipping your latte, as a daughter across town watches her beloved parent writhe in agony.
    Alternative pain therapies have a huge place in pain control for cancer patients, but alone they are not enough.
    I get it. It doesn’t matter what the public thinks. After all, we are the addicts you are addressing, right? Honestly, if this is the rode we continue down, you will be seeing a lot more proposed legislation for doctor-assisted suicide. I know that I would prefer to die than to endure the suffering you are now forcing on the Cancer-ridden.

  • My neck is beyond bad- 3 surgeries and need another – been on opiates on and off (mostly on although I would drop my dosage every summer -go their wicked withdrawals- to see if I still need them) the stigma from pharmacists is terrible (and family!) and had to report one who worked at Publix. I worry every month if I will get my patches in time, or my pain doc retires cause doctors are more worried about their medical licenses then the patient. Why don’t the doctors go on strike? If I can’t get my meds I will be in a wheelchair and will have to hire a caregiver plus be in unbelievable pain. I have already come to terms that at some time in my life I will have to commit suicide due to not being able to get my meds. But when and if I do politicians will see my problem.

  • “…the same opioids that helped fuel today’s opioid crisis.” I disagree. The illicit users conveniently blaming a 1st prescribed medication on their spiral into illicit use is just a convenient excuse. They have jumped on the bandwagon.

    Not initially what I wanted to comment on. I believe we have crossed the threshold into dome kind of insanity here. I mean we are now denying cancer pts & surgical pts adequate relief. Think about that! This is insanity. Dea has implemented more cuts to distribution in 2019 causing a shortage in iv injectibles, drs are being arrested, pts are committing suicide…this is crazy! I can’t stop my mind from entering conspiracy theory territory. This is global & being implemented nearly-worldwide. What the hell is their end-game here?

  • Here is what I wrote to my Oncologists’ nurse after a week of reduced meds (my oncologist CUT my evening OxyContin from 20mg to NOTHING for a ‘trial week’)

    The nurse has suggested reinstating 10mg of Oxy in the evenings, which is what should have been suggested from the outset. But the nurse also says that they want to reduce my morning Oxy to 10, and then eventually to nothing. Below is my plea to them to try to understand my pain.

    “I feel that I’m not being heard when I describe my INTENSE pain in my back. Because of the damage to my spine (a tumor from Stage 4 Lymphoma grew through two of my vertebrae, cracking them) I feel that I will always have this pain.

    “I think that a goal of zero opiate use is not realistic. I want to state that now, clearly, because if this is the plan for me, I think I would need to seek out a pain doctor who might understand the intense, constant, grinding pain of not being able to stand up for more than 10 minutes before the pain in my back is entirely overwhelming.

    “I understand that there is an opiate addiction crisis, but I know how I have suffered this week with my OxyContin dosage cut in half, it’s been terrible. This has been one of the most painful weeks I’ve had since my diagnosis last July.

    “Aside from checking a box that says, “Patient is stepping down her pain meds” I don’t see a good reason to work toward a dosage level that will leave me unable to function. When I have pain, I can’t move. When I can’t move, I can’t go up and down the stairs, or walk easily.

    “Up to this week I’d been taking daily walks of 4-6 blocks, but this week I was unable to as the residual pain from the night seemed to haunt me all day, along with the exhaustion from lack of sleep (due to pain). This week, I didn’t leave the house unless absolutely necessary. I am 57, I am too young for my life to be restricted like this because I’m not allowed the pain medication I require.

    “So if you can explain to me WHY it’s necessary to change my morning dose of OxyContin to 10mg from the current 20mg, I’ll be happy to listen. But if the explanation is simply, “Because we WANT you to take less…” I’m afraid I’ll have a hard time understanding that.

    “I am NOT addicted to OxyContin, each time over the past 6 months when I’ve been asked to step down my dosage I have done so immediately. However, I DO feel that the 20mg in the morning seems to be what works well for me during the day, and the addition of 10mg in the evenings (instead of nothing, as my oncologist insisted) will be an excellent way for me to return to my previous sleep health, and keep the pain in check during the night.

    “Please know that I am USING, not ABUSING OxyContin. I’m happy to reexamine my dosages every few months, but I do NOT accept that a ‘realistic goal’ for me would be to continue cutting and cutting my pain meds down to zero.

    “I have a damaged spine, I have pain. My spine is not going to miraculously heal itself, the pain will continue.”

  • The overdoses are from Heroin and Fentanyl. There has never been an “opioid crisis ” This was done by the Group Prop and the CDC. Prop and Andrew Kolodny want everyone on Suboxone/Buprenorphine . Follow the $$$!! The risk of overdose for pain patients who take their pain medication as prescribed is sooooo low.
    The Drs. were sent a letter and were told not to prescribe over 90mme or lose their license. Now no Dr. Wants to prescribe anything for pain!

  • The current administration is to blame and no one is in line to change this horrible mess. Only in America can this go on for so long. I am ashamed of this country to allow such suffering. My sister died from three kinds of cancer. I will never forget the pain she endured.

  • This is absolutely the most absurd disturbing situation that is happening in our country!! How inhumane to hear that Dr/oncologists and pain management person’s can do to people who are suffering in insurmountable amount of pain!! It’s tortureoes to leave people in this kind of pain!! When is our country going to stop tourtering people who legitimately need pain medicine!!

  • the real issue is the denial of treatment of pain period, the FDA said in its letter to Andrew Kolodny and PROP when they denied the guidelines that there is no difference in cancer vs non cancer pain, so again why should one group get treatment over another, we need proper pain management, regardless of the diagnosis,

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