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Lung Cancer Group Fights Stigma, Raises Awareness

A trio of Northbrook women push for the No. 1 fatal cancer's fair share in research resources.

Once it was the United States vs. lung cancer.

The U.S. Surgeon General’s 1964 report formally linking smoking with lung cancer, after decades of suspicion, seemed to declare war on the disease. Two years later, the drawn and dying actor William Talman filmed a famous TV commercial warning viewers not to smoke like he did. In 1971, the government banned cigarette ads on radio and TV.

Today, lung cancer doesn’t have such a lofty profile anymore, even though it remains the No. 1 cancer killer and increasingly afflicts non-smokers in a pattern that has baffled medical researchers. Other forms of the disease, namely breast, colon and prostate cancers, have seemingly vaulted ahead in public awareness, activism and research funds.

LUNGevity wants to change that, and the push to do so originated in Northbrook and its surrounding communities.

Seven local men and women, all of whom suffered from the disease, founded the now-national LUNGevity organization in 2000 to increase awareness of the disease. They aimed to also eliminate a growing stigma holding back some of that support, and corral funds that, in a difficult economy, often go to support the higher-profile cancer programs.

Of the seven, only one is still alive today: Patti Helfand. 

The No. 1 Cancer Killer

Among the organization’s most passionate spokespersons is Lynda Fisher, wife of Northbrook Police Commissioner Larry Fisher.

Her lung cancer recurred five-and-a-half years after it was originally treated as a grapefruit-sized tumor. Though she is now fine, Fisher knows she lives under a kind of cancer sword of Damocles, with a disease that could reappear at anytime.

She soldiers on with optimism while spreading the word about LUNGevity.

“Oftentimes people assume breast cancer is the No. 1 killer, or colon cancer or prostate cancer,” said Fisher. “The more we get our message out, the more people should know that lung cancer has more diagnoses and more deaths per year than all three combined – breast, colon and prostate.

"Pink [for breast cancer] is everywhere, and God bless all those survivors. It’s politically correct or some reason. But you never hear from [the] media that November is Lung Cancer Awareness Month,” she noted.

Lung cancer kills nearly 160,000 people in the U.S. annually—more than breast, prostate, colon and melanoma cancers and leukemia combined. Only 16 percent of patients treated for lung cancer survive five years after being diagnosed--much lower than other cancers. About 55 percent of all new lung cancer diagnoses are non-smokers or former smokers.

Fisher has written to celebrities ranging from Oprah Winfrey to Carol Burnett asking for help in publicizing the organization's efforts. She said she has rarely gotten a response.

“We have no major national speaker, like Ron Santo for juvenile diabetes,” she said of the late Cubs player. “There are all kinds of people who call out for help: Katie Couric with colon cancer, Lance Armstrong for prostate cancer.”

Fighting For Early Detection, Research Dollars

So along with Fisher, the task of spreading the word falls to two other Northbrook women, both of whom also have very personal stakes in LUNGevity’s success. One is a lung cancer survivor, while the other has seen her family and close friend ravaged by the disease. They are driven in their cause.

Helfand is the only one of the organization’s seven founders still alive. Her lung cancer was diagnosed in 1999--a year before the group was established--by the kind of early detection that is a focal point of her advocacy.

“If I had not been detected early—[if] I had insisted on continuing chest X-rays [as part of my physicals]—I might not be here today,” Helfand said.

She and LUNGevity activists nationwide have a quarrel with insurance companies. Where once chest X-rays were standard parts of annual physical exams, doctors must now specifically request them. Otherwise, the insurance provider won’t cover the X-rays, or the more comprehensive CT scans that confirm a cancer diagnosis.

They contend the combination of the two tests is crucial in early detection before lung tumors metastasize.

Smoking as the leading cause of lung cancer is a given. What is not known is why non-smokers also develop the disease—or why other smokers never are afflicted with cancer long past the onset of their senior years.

“What ends up happening is people smoke till they’re 104, and they never develop lung cancer,” Fisher said. “They have senior citizens smoking away, alive and well and healthy, and never dealt with lung cancer.

"It’s severely underfunded. We get a sliver of what other cancers get for research,” she said about the need for further research on such topics.

“There was also a large stigma attached,” Helfand said. “People thought it was a self-inflicted cancer; there was less interest in finding a cure.”

LUNGevity does have some successes in claiming part of the crowded research-funding marketplace, however. The organization has co-funded more than $8 million in innovative lung cancer research projects with the American Cancer Society, American Lung Association, American Thoracic Society, The CHEST Foundation and other grant partners.

In 2009, LUNGevity was named the fastest growing charity in the U.S. by Charity Navigator. A number of fundraising walks--similar to the breast cancer walks--are regularly scheduled.

“There’s enough money to spread around,” Helfand said. “One [type of cancer] is not more important than the other.”

Effort on Behalf of Those Who Have Passed

Hilda Piell helps with LUNGevity because a close friend, the late Melissa Zagon of Deerfield, founded the organization with Helfand after the non-smoker was diagnosed with cancer at age 32. Zagon fought for six years before succumbing to the disease, while Piell also lost her parents and sister to the cancer.

Piell has never received the dreaded cancer diagnosis. But she has felt its pain as much through the loss of so many loved ones. That is enough motivation for her.

“Knowing this was so important for Missy [Zagon],” Piell said, “and also having my own experiences with my mother [Sara Harris], father [Sidney Harris] and sister [Roz Berke] all [former smokers] dying of lung cancer, this was a cause that was a very close to my heart.”

Zagon's diagnosis was “heartbreaking,” Piell said.

“I remember talking to her after she was diagnosed and already starting her treatment, but at the same time also researching how she could start a foundation that would raise the badly needed funds to find a cure for lung cancer," she recalled.

"How does she have the energy for this? She had a small child. But she had an absolutely indefatigable energy and a strong will to live,” Piell said.

Piell, Helfand and Fisher try to carry on that energy and will to live in their work, in memory of Zagon and the five other LUNGevity founders who have passed away since 2000: Kathleen ‘Kay’ Barmore and Marge Breit, both of Northbrook, Gayle Levy of Glenview, Dick Pemble of Chicago and Dena Winick of Glencoe.

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Caryn Shulman August 22, 2011 at 12:08 PM
Melissa Zagon was my sister in law- we miss her very much! Thank you to everyone who honors her memory.
Lauren Zagon Canon August 22, 2011 at 12:41 PM
Missy was my sister in-law too. We honor her fight and support her cause at the Lungevity Annual Fall Benefit, November 12, 2011. Please come ....it is a great benefit and always a fun time!
Jori Witt August 22, 2011 at 02:02 PM
Thank you for bringing attention to the need for more lung cancer research funding. If anyone would like more information on LUNGevity or its upcoming Fall Benefit, please visit www.lungevity.org/fallbenefit.
Kay Vick August 22, 2011 at 07:59 PM
My son was diagnosed with Stage IV lung cancer on October 5, 2009. He was given this news 5 days after turning 41. He will be 43 on Sept. 30 and we continue to pray for his miracle. We know they are out there. He lives CO and is being treated by some of the best doctors in CO. He NEVER smoked, and like you said ~ people just seem to "blame" lung cancer patients figuring that they did it to themselves. Thank you for working to bring this information out to more and more people!

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