The Many Faces of Lung Cancer
Brian Howell's children holding a photo of their father. From left: Katie Stodola, Allison Howell and Joseph Howell
Date published: August 2009
Brian Howell, former editor of Madison Magazine, went to the doctor on three different occasions for rib pain in his side that wasn't going away.
When the doctors finally did an x-ray, they found Howell had lung cancer. He passed away nine months later. He was only 53.
Howell's story is sadly common. The symptoms for lung cancer -- such as coughing, chest pain, shortness of breath -- can be misleading and mistaken for other maladies like a cold, or in Howell's case, unrelated bone pain.
Often, the cancer is found when a patient is being treated for a different condition, as was the case for Jody Schwerdtfeger's mother.
"She was undergoing a pre-op screening for gallbladder surgery and had a chest x-ray," explains Schwerdtfeger, a registered nurse and organ transplant coordinator for UW Health. "She had been experiencing rib pain, but none of the typical symptoms like a cough. She even had an x-ray six months before that was read as 'normal.'"
By the time the cancer is diagnosed, it is often at a very advanced stage. For both Howell and Schwerdtfeger, their lung cancer had progressed to stage IV.
The Need for an Effective Screening Test
"One of the frustrations," says Schwerdtfeger, "is that there's no good screening for it. It's often caught too late."
That sentiment is echoed by Howell's family. Says one of his daughters, Katie Stodola, "Early diagnosis would've made all the difference. He was passionate about improving early screening."
Anne Traynor, MD, oncologist and director of the lung cancer program at the UW Carbone Cancer Center, explained that currently, there is not an effective screening test for lung cancer.
"Screening takes place on a population scale," Dr. Tranynor explains. "It has to be accurate and able to detect the disease while something can still be done to treat it."
An effective screening test will help reduce the number of lung cancer deaths, says Traynor.
An estimated 219,000 individuals in the U.S. are diagnosed with lung cancer each year, accounting for 15 percent of all new cancer cases, and despite the disease's high mortality rate, lung cancer receives the least amount of federal funding among the common cancers. Federal funding for breast cancer research is typically 16 times that for lung cancer.
Lack of funding is the greatest impediment to making any headway in diagnosing and treating this disease, according to Traynor.
Overcoming the Stigma
Compounding the problem is the societal attitude toward lung cancer, even among the medical community.
Alan Craig with a photo of his sister, Paula
"There's a tremendous stigma with the disease," says Traynor, "That it's a smoker's disease."
Alan Craig, whose sister Paula was diagnosed with lung cancer at age 40, knows well how the stigma can affect those living with the disease.
"When she was first diagnosed, she felt so ashamed," he recalls. "She became a little reclusive even. It wasn't until after she lost her hair for a second time due to treatments that she gradually became more accepting."
One of the first questions people asked upon hearing the diagnosis was, "Did you smoke?," which is common for everyone who is facing the disease.
"I think the only people who never asked whether Paula smoked were the physicians and nurses involved in her care," continues Craig.
Allison Howell, Brian Howell's other daughter, agrees, "The person behind the cancer gets lost because of the stigma. [Brian] really tried to raise awareness and eliminate the stigma."
"He was adamant about getting the word out," adds Stodola, "He wanted to give voice to the disease even as he struggled with it."
Craig points out that when someone is diagnosed with heart disease, they're not asked about their diet or exercise habits. Yet there is a perception that lung cancer patients brought the disease on themselves.
"My father wrote about the disease in Madison Magazine," says Joseph Howell, Brian's son. "He pointed out reasons that other people can get different kinds of cancer by having unhealthy diets and things like that but with lung cancer, it's always synonymous with smoking."
There are even divisions within patient populations – emotional boundaries between smokers and non-smokers, those who developed lung cancer from radon or environmental exposure.
In Paula's case, she was only 40-years-old, far younger than the average 70-year-old patient. At one of the most challenging times in their lives, patients can struggle to find support and understanding.
"No one deserves to be invisible," says Traynor. "And blaming the victims is getting us no where."
Raising Funds and Finding Hope
For families like the Schwerdtfegers, Howells and Craigs, they've dedicated their time and energy to raising money and awareness for the disease.
"My dad was a truly motivational person," Allison Howell explains. "He was also in a very unique position being in the media profession. From the moment he was diagnosed he immediately began researching the disease and writing about advancements."
Adds Joseph Howell, "Most of the time he was sick was spent researching everything he could about lung cancer, from shitake herbal teas to every different type of chemo. He wanted to know everything there was to help beat his disease."
A recreational golfer, Brian and his friends talked about organizing a golf outing to raise awareness and funds for lung cancer. After his death, his friends and family made the outing a reality with the Brian Howell Golf Outing.
Since its grassroots beginnings, the golf outing combined with another to become the Drive for Hope Golf Outing. Through the efforts of families and friends whose lives have been touched by lung cancer, Drive for Hope has raised more than $243,000 in the last four years for lung cancer research at the UW Carbone Cancer Center.
Inspired by their dad, all three Howell children also participate in various run/walks as a way to raise awareness and funds.
"It is a constant struggle to get the awareness out there. That's one reason why the events like the golf outings and run/walks are so important," says Joseph.
Jody Scherdtfeger holding a photo of her mother
Jody Schwerdtfeger was training for her first marathon when her mother passed away. She dedicated her run to her mom's memory.
"One of the songs I play while I run is Melissa Etheridge's "I Run for Life," she comments.
Since her first marathon, she has gone on to run two half marathons and two full marathons. All the money she raises supports the Creating Hope campaign for lung cancer research at the UW Carbone Cancer Center.
She jokes about her marathon experience, "For someone that never ran before, it's pretty amazing."
Schwerdtfeger estimates she's raised approximately $25,000 for research through her runs.
"When I first began there wasn't much out there, but it's since grown with outings, run/walks and groups really dedicated to raising awareness and funds, like the Lung Cancer Task Force," Schwerdtfeger said.
Craig, like Schwerdtfeger and the Howell family, is also a member of the Lung Cancer Task Force. In addition to volunteering his time with the group, he's also committed 10 percent of all the sales from his business to lung cancer research and disease prevention through education.
"I want to do what I can for research," he says.
While there's still much to learn about lung cancer, its biology and treatment, there's also a tremendous amount of hope for patients and their families.
"Paula never gave up hoping, even until the very end," concludes Craig. "This disease needs more reason for hope. I believe that will come with better funding and research."