Treating cancer patients like criminals won't solve the opioid crisis

I am a 45-year-old woman who's always been in fairly good health. I practice yoga, run nine miles a week, lo...

Posted: Sep 5, 2018 7:28 PM
Updated: Sep 5, 2018 7:28 PM

I am a 45-year-old woman who's always been in fairly good health. I practice yoga, run nine miles a week, love kale, avoid red meat, generally get enough sleep and don't smoke cigarettes. I also have stage 3 colon cancer -- I was diagnosed a mere two months after the government's colonoscopy screening age recommendation was lowered from 50 to 45. I was surprised as anyone to find myself among the alarming recent rise in patients under 50 being diagnosed with colon cancer.

I got this diagnosis in western Pennsylvania, one of the epicenters of the opioid crisis raging in this country. The state ranks fourth-highest in the nation for drug overdose deaths (with two-thirds of the nationwide toll from prescription opioids fentanyl and oxycontin and from heroin). A new study from the University of Pittsburgh also finds this state to be the highest in the nation in unreported opioid deaths, meaning the statistics may be even higher than previously thought.

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Fighting an epidemic on this scale is, obviously, incredibly important. But it is also creating a terrifying new reality for patients facing painful medical procedures. When I woke up from laparoscopic surgery at Monroeville, Pennsylvania's Forbes Hospital to remove 6 inches of my colon and a pingpong ball-size tumor from my body, I entered into a medical system so frightened of the specter of addiction (and, I imagine, potential ensuing lawsuits) that treating what I know to be my legitimate pain during recovery became a distant afterthought.

Germophobe that I am, I walked into the hospital aspiring to leave the place as soon as humanly possible. When I asked nurses to take my catheter out after two days -- it was uncomfortable and complicated the multiple daily walks the surgeon had recommended -- they immediately also took away the dilaudid pain pump and saline IV I'd been administered post-surgery and put me on a low, 5 milligram-dose of the opioid Percocet instead. I soon found myself sobbing in bed, unable to walk and clutching my husband's hand, the pills not nearly strong enough to counter the crippling pain in my abdomen.

The hospital released me two days later with half the dosage of Percocet my nurse told me -- quietly, when no doctors were around -- was reasonable to treat a colon resection. I got into an argument (embarrassingly involving more tears, thanks to the pain) with the hospital doctor who wrote me the prescription. He shrugged and said they were pretty sure I wouldn't abuse the drugs but couldn't be totally sure.

He was -- in the most insulting way possible -- enforcing the new anti-opioid mandate from the Centers for Disease Control and Prevention: On March 15, 2016, the CDC introduced new limiting guidelines on the prescribing of opioids, designed to target primary care physicians who gave them out too carelessly and for too long to patients with chronic pain (defined as "pain lasting longer than three months or past the time of normal tissue healing"). The ensuing media hype around the guidelines, though, has turned "opioid" into a dirty word no matter what its context.

The guidelines do not include active cancer treatment, but what they meant for me, as someone who had been treated not (yet) by an oncologist but a surgeon, was this: I spent the next two weeks curled in a fetal position on my couch at home, my endlessly patient husband taking care of everything from keeping up our house to trying to get me to eat to responding constantly to emails, texts and calls from my anxious friends and family. When my husband and I asked -- no, let's be honest, begged -- the doctor's office to refill my prescription, I was subjected to multiple interrogations by nurses at the surgeon's office about my pain level.

In the language of pain management, it's all about the number on a scale from 1 to 10, which no one bothered to clarify to me beyond the illustrations on a chart displayed in the doctor's office of a face going from happy to miserable. It hardly seemed like enough of a precise diagnosis for what I was feeling. They reluctantly agreed to give me 15 more pills, which amounted to a few more days of treatment, running counter to their prediction that I would need two to six weeks of recovery time at home.

I know all about the dangers of opioids; it's hard to miss hearing about them in this part of the world. We have seen opioid addicts stumbling around our small town like the walking dead. We have heard the warnings about the rash of deaths from overdoses, about the way opioid addiction can lead people to turn to cheaper and deadlier heroin.

As for me, I took the pills they gave me only when needed -- and can't wait for the day I can get back to being able to walk more than a couple of blocks at a time. I am desperate to return to my job as a journalist. But to do so, I need my post-surgical pain to be treated adequately. When I'm seriously hurting, I cannot walk or eat, two of the main building blocks for recovery.

I'm not an addict; I'm a cancer patient. And I am shell-shocked from my experience with the current state of medical pain management thus far. (I have since begun chemotherapy, which will entail longer-term treatment but with less outright pain.) A couple of Advil or Tylenol is not enough to treat post-abdominal surgery pain in the first weeks afterward despite what my doctor's office blithely told me. When I met with my surgeon and his team for my two-week follow-up, I repeatedly mentioned I had been in a lot of pain and that over-the-counter medication was not helping. No one did anything other than shrug and move on to the next subject. (There is, relatedly, a mounting public outcry about women being systematically under-treated for pain and/or written off as neurotic hypochondriacs, but that is a rant for another time.)

Eventually, I was advised by an oncology therapist that I ought to contact a pain management clinic immediately. I did, and within two days had a prescription for the less-addictive painkiller Tramadol as well as a couple of other non-opioid meds. I think it bears asking why nobody at my surgeon's office told me about the existence of pain management clinics, or Tramadol. I am nothing if not tenacious (thanks, journalism background) -- and am lucky enough to have a wide network of well-connected friends who doggedly help me find what I need, treatment-wise. What about everyone out there who doesn't have these advantages? What are they going through, if they don't know the right questions to ask?

I am getting off relatively easy, with a prognosis that should have me up and around within months; it's patients who struggle with chronic and lifelong pain who are suffering the most. "Chronic pain patients and the groups that represent them say the escalating government response to opioid addiction ignores their need for the painkillers and doctors who will prescribe them, leaving some out of work, bedridden and even suicidal," USA Today reported in a recent story.

Out here, and I imagine in many other places around the country, the new treatment mantra for the gravely ill seems to be "Suck it up and put an ice pack on it." One editorial in an Allentown, Pennsylvania, newspaper quoted Dr. John Gallagher, chair of the Pennsylvania Medical Society's opioid task force, as icily saying that "any decrease in prescribing is to be celebrated." Regardless of the huge potential for needless suffering, the CDC continues to demonize opioid prescription across the board. As one addiction psychiatrist put it in Politico, "The myth (is) that the epidemic is driven by patients becoming addicted to doctor-prescribed opioids, or painkillers like hydrocodone (e.g., Vicodin) and oxycodone (e.g., Percocet)," when in reality, the problem is that "as more prescribed pills are diverted, opportunities arise for nonpatients to obtain them, abuse them, get addicted to them and die." The psychiatrist pointed out that, according to the Substance Abuse and Mental Health Services Administration, "among people who misused prescription pain relievers in 2013 and 2014, about half said that they obtained those pain relievers from a friend or relative, while only 22 percent said they received the drugs from their doctor."

As of right now, there's no end in sight to the current backlash against the humane treatment of pain that exceeds the reach of aspirin or Advil. So please, I urge everyone in your 40s and over, get a preventative colonoscopy. There's never been a good time to get colon cancer, but now might be one of the bleakest.

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