When Katie Brown, vice president of support and survivorship programs at LUNGevity, was thrust into the role of caregiver for her father after his lung cancer diagnosis in 2002, she felt alone.
“It was a very different experience back then,” she said during a recent phone interview. “We had no support. There were very few treatment options. He’d never been sick in his life. When he was diagnosed, it was already a stage four diagnosis. He lived 11 months and 14 days.”
Part of the reason for Brown’s dilemma is that despite being the most common form of cancer in the United States in both men and women, lung cancer doesn’t get the attention it should.
And it’s why she’s so passionate about the work she does today. “That’s the purpose of Lung Cancer Awareness Month—just making people aware,” she said. “There is a common misconception among the public that it’s a smoker’s disease. If you don’t smoke or you quit, you might think it doesn’t affect you. But it can affect anybody—if you have a smoking history, or exposure to radon, asbestos and other carcinogens, air pollution and unexplained cases.”
Beyond simple lung cancer awareness, Brown also wants to make sure caregivers have the support they need to help their loved ones. LUNGevity provides a wealth of resources for lung cancer patients and the people taking care of them, from blogs to a resource center to a mentorship program, where caregivers are matched to other caregivers.
And through a partnership with Bristol-Myers Squibb and other lung cancer advocacy organizations, they have helped create Navigate Lung Cancer, a site designed to provide the latest information for people making their way through a diagnosis.
Things have changed a lot in the 14 years since Brown cared for her father, but a caregiver’s role remains the same. “Caregivers can offer emotional support, practical support, physical support,” Brown said. “They can help at doctor appointments, provide financial support. There are a lot of ways caregivers can support someone.”
Perhaps the greatest function of a caregiver is to be a second set of ears for a patient. “The most important thing for the caregiver is to take notes during the office visits, in meetings with the physicians. Try to research the disease prior to the visit,” said Anita Logsdon, a nurse in oncology hematology care. “Ask specific questions: What type of lung cancer? What is the stage? What type of treatment options are available? What are side effects of treatment? Is there an available clinical trial?”
And though both LUNGevity and Navigate Lung Cancer provide invaluable information, Brown suggested that caregivers take their search for answers offline, too. “It’s kind of universal that caregivers want more information,” she said. A recent caregiving survey reached this conclusion, and its results were in line with what the folks at LUNGevity are seeing.
“If caregivers are given adequate support, they’re better able to care for their loved ones,” Brown said. “And they should tap into resources where their patient is being treated—that social worker, oncology nurses, the patient navigator, local support groups. Online sites are great resources, but I would also suggest caregivers reach out in their communities.”