WASHINGTON "I'm sorry. You don't have breast cancer," the oncologist told Charmaine Atkenson.
The 48-year-old mother of two had something far worse -- stage 4 lung cancer. It had spread to her spine, bursting the bone open. It was not only a sentence of death; it was a judgment.
Even though Atkenson never smoked, she felt almost ashamed. "I found that I never would even say what kind of cancer I had. Or I would always start by saying I never smoked and I never lived with a smoker," she said in a telephone interview.
Lung cancer patients, advocates and specialists are meeting this week in Chicago, alongside the annual American Society of Clinical Oncology meeting, to try to dispel some of that shame.
Atkenson is there, taking part in an "advocacy summit" -- the group's first attempt to organize a movement akin to the powerful groups that have lobbied successfully to get more funding for breast and prostate cancer research.
Dr. Joan Schiller of the University of Texas Southwestern Medical Center and the National Lung Cancer Partnership said lung cancer carries a stigma that no other cancer does.
"They feel ashamed of their cancer. They feel guilty about their cancer," said Schiller, who published a study last year in the Journal of Thoracic Oncology showing primary care doctors were less likely to send lung cancer patients to a cancer specialist than patients with other types of cancer.
This means doctors, researchers and even patients are not pressing as hard for better therapies as they do for other cancers.
Lung cancer kills 1.3 million globally a year, according to the World Health Organization, and the American Cancer Society says lung cancer was diagnosed in 213,380 people in the United States in 2007, killing 160,390, making it by far the deadliest U.S. cancer.
Yet Schiller says less money is spent on lung cancer research than on other cancers. In 2006, the National Cancer Institute estimated it spent $1,638 per lung cancer death, compared to $13,519 per breast cancer death and $11,298 per prostate cancer death.
Atkenson's oncologist assumed the large tumor in her spine was caused by undiagnosed breast cancer that had spread.
"He said, 'But don't worry. We know so much about breast cancer -- we can really promise you a full life expectancy'," Atkenson said. After the test results came back, the message was far different.
"He said, 'You have lung cancer, metastatic lung cancer and you have four to six months to live."
He was wrong. Atkenson, of Hinsdale, Illinois, is still alive and well nearly two years later. Newer treatments offer better hope to lung cancer patients -- including several in studies to be presented to the ASCO meeting.
But she finds herself explaining almost guiltily that her cancer is a mystery because she never smoked. "I even had an oncology nurse say to me, 'How did you get lung cancer' and I said probably because I had lungs. She never would have asked that if I had any other kind of cancer," Atkenson said.
Not only does the stigma affect funding and perhaps even doctor's attitudes -- it may prevent patients from pursuing lifesaving treatments, Atkenson and Schiller both believe.
"I think a lot of them, when they get handed the diagnosis, they feel as if they did cause it to themselves," Atkenson said.
"Smokers feel they somehow deserve it."
Two-thirds of all cancer cases can be traced to lifestyle, including obesity and poor diet.
But no one blames breast cancer patients for their disease. "If I had had cervical cancer, nobody would have asked me 'how many sexual partners did you have?'" Atkenson added. Cervical cancer is caused by a wart virus that is transmitted sexually.
Even if she had been a smoker, Atkenson said, "Nobody deserves lung cancer. Nobody deserves any kind of cancer."
(Editing by Michael Kahn, editing by Jackie Frank)