A diagnosis of cancer requires patients and their families to confront many challenges, including how to arrange for treatment, how to pay for it, and — for some — facing the possibility that the patient will not survive. Sadly, for many people diagnosed with lung cancer, there is an additional burden: coping with people’s perceptions of the disease.
“The stigma of lung cancer is very real,” says Memorial Sloan Kettering medical oncologist Mark Kris, who specializes in caring for people with lung cancer. “It affects society, and it horribly affects patients. It gives them an added burden on top of the burden of their illness.”
According to Jamie Ostroff, a clinical psychologist who directs MSK’s Tobacco Treatment Program and provides psychological care to patients and families coping with lung cancer, the disease is generally thought to be stigmatized for two reasons. Although survival has improved with early detection and many treatment advances, lung cancer has historically had a poor prognosis, with a five-year survival rate of only 4% for patients whose disease is in the most advanced stage. But more significantly, about 85% of people diagnosed are current or former smokers.
“It’s very common for patients to regret starting smoking when they were young, but it’s important to emphasize that nobody who smoked ‘caused’ their cancer,” Dr. Ostroff says. “The harmful chemicals in cigarettes caused the cancer.”
Dr. Kris furthered that sentiment, saying that the blame for smoking-induced lung cancer falls to the tobacco companies, not the people who smoked.
“When we say that people have a choice about smoking, that’s not correct,” he notes. “Most smokers start when they are adolescents, and kids having a cigarette with their buddies are not making a lifestyle choice. Billions of dollars have been spent to market smoking to young people, and once you’re hooked, it’s a horrible addiction that’s very hard to quit.”
Even those who have never smoked don’t want to talk about their lung cancer diagnosis because of the societal stigma, Dr. Kris adds.
How Healthcare Providers Can Help
Many patients are not fully aware that continuing to smoke following a diagnosis of any cancer is associated with worse outcomes. Dr. Ostroff explains that in order to help patients struggling with nicotine addiction and tobacco dependence, it’s important for healthcare providers to ask people with lung cancer about their smoking history and current smoking status. But it needs to be done in an empathetic, nonjudgmental way that doesn’t make patients feel they are being blamed.
“According to our research, half of patients with lung cancer have had an interaction with a healthcare provider — not necessarily a doctor — that they perceive to be stigmatizing,” she says. One of her current projects is to develop a communication skills training program to help healthcare providers have more compassionate conversations about lung cancer.
As part of this work, Dr. Ostroff is conducting a study to better understand the thoughts and feelings of those with lung cancer. Researchers will use the results to evaluate the potential benefit of new psychosocial support programs for people with the disease.
MSK psycho-oncologist Jimmie Holland started a support group for people with lung cancer more than 20 years ago, after a patient told her that she’d rather have been diagnosed with breast cancer because there would have been so many more opportunities for support. Dr. Holland’s group is still going strong and meets twice a month.
How Friends and Family Can Help
Dr. Ostroff says that even casual questions from friends about smoking history may create discomfort for patients. She hopes that her research will help to develop interventions so that patients and their families can mitigate those feelings and educate well-meaning friends and acquaintances about lung cancer.
“Whether you’re a healthcare provider, a friend, or a family member, all people with cancer need respect, hope, and support,” Dr. Ostroff says. “Having lung cancer doesn’t mean they need any less.”
“We talk a lot in our support group about how friends and family can help people coping with lung cancer,” Dr. Holland says. “The most common message from patients is, ‘I wish they would keep treating me the same way they did before I got sick.’ Be available to talk about the illness if the patient wants to, but if they don’t, talk about something like football, or whatever else you would have talked about in the past.”
“The most important message is to not run away,” she adds. “Many patients are hurt because their friends avoid them after they’ve been diagnosed with lung cancer.”
Both Dr. Kris and Dr. Holland make the comparison to HIV/AIDS, which had a much greater stigma in the 1980s and 1990s than it does today. This change came in part because of the development of new treatments and a greater understanding of how transmission of the virus occurs.
Dr. Holland says the stigma against lung cancer is already less than what it was decades ago. She credits this in part to targeted therapies and immunotherapies that have enabled many patients to live longer.
If you are interested in Dr. Holland’s lung cancer support group, which meets every other Wednesday at noon, please call 646-888-0026.