Welcome to the age of cancer rehab

Doctors are finally wising up and realizing that the effects of disease don't stop when treatment does

Topics: Cancer, Wall Street Journal, healthcare, Chemotherapy,

We talk about preventing cancer. We talk about treating cancer. And we talk, endlessly, about “the cure.” Yet what is rarely addressed in all of our conversations about cancer is what happens after cancer. As a Wall Street Journal story this week explains, cancer, for all the damn attention we give it, is in many ways a still vastly ignored and underestimated experience. That’s why a new movement in medicine is afoot, with the goal of helping patients deal with the side effects and long-term physical and emotional aftereffects as they transition back to health. Commission on Cancer Chairman Dan McKellar calls this next step “an absolutely essential part of cancer care.” Call it cancer rehab — a notion that’s been far too long a time in coming.

The ways we respond to our cancers are even more varied than the myriad kinds of cancers themselves. For some of us, it’s an easy operation and brief recovery. For others, it’s years of invasive operations and debilitating treatments like interferon. It can be a kick in the butt that doesn’t stop kicking. It can mean lost energy and lost sex drive and lost appetite and wondering what the hell is wrong. A recent National Cancer Institute study found that “more than a third of the nation’s 12.6 million cancer survivors have had physical or mental health problems that put their overall health in jeopardy and had a negative impact on their quality of life.” But traditionally, life after cancer treatment for patients has meant a friendly “See ya at the next CT scan!” as we’re gently booted out the door.

In much the same way that doctors and caregivers often conspicuously downplay side effects of treatment  — and may not even mention the emotional hell ride of it – they can neglect to acknowledge the difficulty of entering the world of survivorship. And patients, discouraged from sharing their post-treatment physical and mental changes, can find themselves assuming, as the NCI study’s lead author Kathryn Weaver says, that their pains and discomforts are simply “the new normal.”

Now, however, the American College of Surgeons has begun requiring cancer programs to offer rehabilitation services – and facilities like Johns Hopkins are stepping up. Rehab programs can help patients with physical and occupational therapy, diet and nutrition, “as well as treatment for sleep problems, depression and cognitive impairment.” At Florida’s Lee Memorial Health System, for example, a team of healthcare workers will now create a “personalized rehab plan for each patient.” And Medicare and most insurance companies are covering the services. It’s about friggin’ time.

Cancer is a unique – and peculiar – set of diseases. People in the thick of it are obnoxiously said to be “battling” it – and those who die have somehow “lost.” We cheerlead with chipper rah-rah-ism,  spinning cancer as “crazy and sexy” instead of terrifying and painful.

It’s not that putting on a happy face and being positive aren’t important. Hope and resilience and joy are all essential. But those things alone won’t get a person’s strength back. It’s also vital that cancer patients get conscientious attention to the battery of peripheral crap that must be dealt with when living after disease and treatment. It’s important, if cancer facilities are to offer truly compassionate care, to inquire about and acknowledge the limitations that cancer imposes, and to help patients work through them. Healing doesn’t end the moment the scans are clear. Healing can be an arduous and frustrating road, a process fraught with setbacks and fear and the intense pressure to just get over it and be our old selves again. And healing can’t happen without help. As Lori McKitrick, a speech therapist who works with head and neck cancer patients says, “We are doing a great job saving people’s lives. But we have to help them live their lives too.” That’s a new “new normal” we can all aspire to.

Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

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