I’ve dedicated my entire career to helping those diagnosed with cancer cope better, so they can regain the best quality of life possible. I was heartened by a recent New York Times article detailing efforts by the National Cancer Institute (NCI) to change the definition of cancer and potentially eliminate the use of the word for those diagnoses that might never lead to cancer. Reframing how and when a doctor uses the word “cancer” could measurably reduce the emotional and physical toll of the disease.
Removing the “cancer” label for those diseases that are premalignant and nonaggressive, such as ductal carcinoma in situ, is an important first step toward reducing the cultural charge of this disease. It should not slacken the pace of research to integrate new medical advances, but it does recognize the reality that cancer changes not only cell behavior but human behavior.
Even though my work centers on cancer patients, I often wonder what I would do, personally, if faced with “the C word.” I’ve seen the ravages up close. My mom died of the disease when I was a teenager. The word “cancer” can catapult one’s mind to immediate thoughts of surgery, chemotherapy and radiotherapy—and to the effects so many fear: pain, fatigue, nausea, vomiting and hair loss. We wonder how any human being can tolerate it.
There’s no doubt that medical advances in cancer research have led to treatments that are more individualized, but as the article underscores, being told one has cancer can often lead to unnecessary procedures and overtreatment, and as a result, unnecessary losses in quality of life.
To be sure, there are many inspiring examples of patients diagnosed with cancer, treated and currently in remission. Some people report that the experience fundamentally changed their outlook on life and clarified what’s actually important. Yet no one disputes that cancer changes you and deeply affects those around you. It can mean living with poor body image, irreversible physical disability and dysfunction, sexual impairment, cognitive loss, anxiety, depression, financial strain, relationship stress and loss of independence.
The notion of cancer as “the dread disease” continues to permeate the cultural consciousness. Even among those with cancers that are the most curable, it often brings reactions of shock and fear. And not just for the patient. I’ve heard from some cancer survivors who say that family and friends have shunned them after learning about their diagnosis—a stigma so painful it can be crushing for someone with cancer.
No one should feel ashamed of or resigned to having cancer. In the larger picture of public health, cancer should not get a worse rap than heart disease or diabetes, though it often does. Moreover, it should not lead a man or woman to have a procedure that carries risks—a breast removed, a prostate irradiated—based on fear and not on facts.
I applaud the NCI and its working group for trying to reduce harm by changing the terminology. Until we perfect individualized medicine and ultimately achieve a cure, moving patients from fear to hope and empowerment will be a step forward.
Alyson B. Moadel is an associate professor of clinical epidemiology and population health, Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.