Advertisement They are blamed for causing their own cancer because they smoked. Even if they never smoked, it is assumed they did, and they are blamed.
Sue Eber, a 68-year-old lung cancer survivor from La Crosse, said people with other cancers don’t have to live with that burden of blame and shame.
“No one asks for cancer, whether they smoked or did not smoke,” Eber said. “There are plenty of young women who have lung cancer who are embarrassed to say it, and they never smoked.”
Eber and her daughter, Sandy Brekke, participated in the first Lung Cancer Advocacy Summit in Chicago in May. They were among more than 50 lung cancer survivors and family members from around the country to share their experiences and develop strategies for combating the stigma and raising awareness of the disease.
“As an outsider, it was clear to me that people with lung cancer at the summit were very angry because others felt the cancer was their own fault,” Brekke said. “It’s so hurtful, and people were embarrassed to tell others they had lung cancer.”
Now both Eber and Brekke are advocates for the National Lung Cancer Partnership. Brekke said her mother is even more passionate about education and public awareness of lung cancer since the summit.
Since her diagnosis three years ago, Eber has been trying to lessen the stigma associated with lung cancer and spread awareness about the disease and smoking. She has talked to community groups and helped start a support group a year ago for people with all types of cancer.
“There was nothing specifically for people with lung cancer, and I wanted a place for them to come for support,” she said.
Now, area lung cancer survivors also can take part in a lung cancer support group via teleconference with the University of Wisconsin-Madison, she said.
Eber smoked cigarettes for 16 years, starting at age 21 while in college. She quit cold turkey 32 years ago at the age of 37 after her son, Todd, who was hospitalized for a broken leg, begged her to quit when she wanted to go outside for a cigarette.
“I made a promise to him and I kept it,” she said.
Statistics show that after people have not smoked for 25 years, their risk for lung cancer is the same as that of a non-smoker.
But Eber said she believes smokers still have a higher risk, even after they quit.
“That’s why we need to educate people that they shouldn’t start smoking and if they smoke, they need to quit,” she said.
She said people need to recognize the risk for lung cancer even if they don’t smoke because early detection and diagnosis will hopefully make a difference in the future.
“If people have not smoked, they think they are not at risk, but they still may be,” Eber said.
According to the American Cancer Society, about 10 percent of men and 20 percent of women with lung cancer never smoked.
Eber said public and private funding for research is lacking even though lung cancer is the leading cancer killer in the United States, costing more lives than breast, colon and prostate cancers combined.
The National Cancer Institute estimates it spent $1,638 per lung cancer death on research in 2006, compared with $13,519 per breast cancer death, $11,298 per prostate cancer death and $4,588 per colorectal cancer death.
“If there’s no funding, there will be no screening and early detection,” Eber said. “People get a diagnosis for lung cancer much later and then it is often too late.”
Eber, a nurse at Gundersen Lutheran Medical Center for 22 years, was diagnosed with non-small cell lung cancer in December 2005. She had pain in her shoulder and an X-ray showed a dislocated shoulder and cancer.
“The first few days were horrible. I was in total shock,” Eber said. “I had quit smoking so long ago and I had gotten back into shape.”
Eber had seven weeks of radiation treatment and six months of chemotherapy. She said she will continue with cancer treatment for the rest of her life.
“The non-small cell cancer is more responsive to treatment,” she said.
Brekke said her mother has done well with treatment because she was in good shape and she continued to run, an activity she took up more than three decades ago.
“She flew through those treatments,” Brekke said. “Exercise made a difference for her. She has changed my mindset about exercise. You do it so you feel good today.”
Smoking contributed to her cancer, but so has radon, Eber said. High levels of radon were found in her home. Radon exposure is estimated to be the second leading cause of lung cancer, accounting for 10 percent to 14 percent of total annual lung cancer deaths in the United States.
Eber has stage 4 lung cancer; dhr has only a 5 percent chance of surviving five years. She is in her third year post-diagnosis.
“I decided I’m going to be among the 5 percent,” she said. “People with lung cancer can survive.”
Cancer fails to keep Eber from participating in triathlon
Sue Eber recently participated in the Danskin Chicagoland Women’s Triathlon with her daughter, Sandy Brekke, and her 13-year-old granddaughter, Hannah Brekke.
Eber and Sandy Brekke participated in their first Chicagoland Women’s Triathlon in 2002 to raise money for cancer, and they participated in the triathlon until Eber’s cancer diagnosis three years ago.
After the diagnosis, they thought they would never participate again.
But they did three months ago, with Hannah, an eighth-grader at Longfellow Middle School, joining them. They were the first three- generation participants in the event, they said.
Hannah said she was inspired by her grandmother and gave a presentation on her battle with cancer as a school project.
“I didn’t think we’d do the triathlon again,” Sandy Brekke said. “I never thought I’d have that day together with her (mother) again.
“The three of us are looking at doing it again next year.”
— Terry Rindfleisch
