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Caregivers get someone to take care of them

New website helps people who care for lung cancer patients

By Malcolm Garcia, Special to the Tribune

December 14, 2011

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Friends and relatives caring for lung cancer patients have a new resource to turn to after the recent launch of a 24-hour online service for caregivers by LUNGevity Foundation, the country's largest lung cancer organization.

The foundation in late November unveiled the Caregiver Resource Center, at lungevity.org/caregiver, which offers emotional support, practical advice and patient advocacy advice, among other services, said Andrea Sterns Ferris, president and chairwoman of the board of LUNGevity.

"A caregiver has to be strong, and they often neglect themselves," Ferris said. "Their world has been thrown into a tizzy. The resource center has gathered information people need in one place."

Jill Feldman, of Deerfield, said caregivers grapple with their own set of stresses.

"In many ways, it's worse being the caregiver for a family member with the disease than being the patient," said Feldman, 42, a nonsmoker who was diagnosed with the disease in 2008. Feldman had her second lung cancer operation in October.

"As a patient, your focus is on getting healthy and feeling better," said Feldman, who lost her father and two grandparents to lung cancer when she was 13. Her mother and an aunt also died of the disease. "But the caregiver has to try and maintain normalcy, going to work, taking care of the kids, while at the same time they're taking care of the person they love with a fear of what will happen to that person."

According to the Illinois Division of the American Cancer Society, in 2012, about 9,560 new cases of lung cancer will be diagnosed in Illinois, and an estimated 7,000 people in Illinois will die of the disease.

Cigarette smoking remains the primary cause of lung cancer. The disease is the nation's No. 1 cancer killer, taking more lives annually than breast, prostate and colon cancers combined. More than half the people diagnosed with lung cancer have never smoked or have quit smoking. The overall survival rate for lung cancer is about 15 percent.

"My father quit smoking and 50 years later he got lung cancer when he was 88 years old," said Philip Bonomi, director of the Division of Hematology and Oncology at Rush Memorial Hospital. "I knew who to call, but for someone new to the disease and without a medical background, a resource center is a huge help."

Unlike other cancers, lung cancer often stigmatizes the patient.

"People think they did it to themselves because they smoke, that they are the victim of a disease they should not have to bear," said Malcolm DeCamp, chief of thoracic surgery at Northwestern Memorial Hospital. "The caregiver feels the stigma too."

The American Cancer Society also offers online support through its Patient Navigation Services.

"One thing we try to do is lead people to others who can help them access the resources necessary to help them through the process," said Adrianne White, vice president of health initiatives and advocacy for the Illinois Division of the American Cancer Society. "We can say, 'Let's get you with other people experiencing this,' or 'We can refer you to the appropriate counseling service.'"

The American Lung Association often hears from lung cancer patient caregivers, said Michael Mark, vice president of its HelpLine Services.

"The questions go on and on: What can I do? Who can I ask for? What's out there?" Mark said. "They need a place that's an island in the storm, a place of tranquillity to land and get support."

As Feldman recovered from her second lung cancer surgery, she drew from her experiences as a caregiver when thinking about her husband and four children.

"I've carried that load they're carrying as a caregiver," Feldman said. "I've been in hospital waiting rooms, waiting for someone I love. I said to my son, 'I get it. You don't like being looked at as the kid whose mom has lung cancer. There may come a time you'll want to talk to people who are also in your position.'"