Against the odds

Two-time lung cancer survivor Merlene Rodgers is part of a new story being written about cancer care in Kentucky

It started with a lingering cough.  At first, she didn’t worry. Spring rains in Kentucky had flooded the basement. Must be the mold, she thought. Months later, still coughing, she scheduled a checkup. The X-rays showed a mass: right lung, bottom lobe. Walking pneumonia, her doctor said. She took the antibiotics, but the cough persisted. There were new tests. Needles. Machines. More tests. 

Her doctor called on a Monday in November. She took the call from her desk at the local paper, where she had worked for 21 years writing a weekly column about life in Lexington, Kentucky. It was not pneumonia. When he told her what it was, she heard a death sentence. No one she knew had survived this. Her mind raced through plans for the end. How would she tell the kids? Was her will in order? Would this be their last Christmas together?

Her mind was mush, but her deadline neared. She leaned over her keyboard and typed four words:

I have lung cancer.

a horse

Statistics gave Merlene Rodgers a 50-50 chance of making it through the year.

But she was not a statistic. Merlene was a 53-year-old woman with knowing brown eyes, a deep faith and an ornery sense of humor. She was a wife. A sister. A daughter. A writer who gave voice to hard truths—about racism, human rights, social injustice—unfazed by daily hate mail. Colleagues called her “a force of nature.” Three grown children called her “Mom.” 

That November day in 2004, Merlene joined the ranks of the more than 220,000 Americans diagnosed annually with lung cancer.  Fewer than half of them will survive the year; approximately 425 die every day. Lung cancer is the number one cancer killer in the world. In the U.S., Kentucky is ground zero, with the nation’s highest rates of diagnosis and death; in some counties, those numbers are three times the national average.

“We’re losing 3,500 people a year to lung cancer in Kentucky,” says Dr. Tony Weaver, who treats the disease during his rural house calls every other week. “That’s more than five times the rate we lose to breast cancer. It eclipses any other cancer.” 

Take a closer look at the story of Kentucky LEADS

In fact, nationally, lung cancer claims more lives each year than the next three deadliest cancers combined. It’s the number one cancer killer of men and women in the U.S. Yet most people would be hard-pressed to identify a lung cancer ribbon or recall the last time they joined a lung cancer walk. And there’s a reason for that.

“There’s no story right now,” Weaver says. “It is a disease that is so devastating it simply has few survivors, voices or advocates.”

That’s changing.

Several years ago, the Bristol Myers Squibb Foundation sought to turn the tide on outcomes for lung cancer patients in underserved regions throughout the U.S. Thus began the search for innovators with the goal of developing new strategies to improve lung cancer screening, care and support. The Foundation’s discussions with the Kentucky Cancer Consortium, Kentucky’s comprehensive cancer control program, catalyzed the creation of the Kentucky LEADS Collaborative. Weaver was among the first physicians to lend the group his support.

Kentucky LEADS addresses the full spectrum of lung cancer care. (LEADS stands for Lung Cancer Education, Awareness, Detection and Survivorship.) The three-year initiative, funded by the Bristol Myers Squibb Foundation and moving into implementation now, is a partnership among the University of Kentucky, the University of Louisville and the Lung Cancer Alliance.

“This program brings researchers, clinicians, university experts and local officials together to create a comprehensive program from early detection all the way through survivorship,” Weaver says. “This is a great program, one that we’ve needed for a long time.”

Kentucky LEADS has three main components: provider education; prevention and early detection; and survivorship care. Its programs aim to educate doctors about new tools and treatment options, empower and engage patients in their healthcare, and promote access to high-quality screenings that may create a whole new subset of patients: survivors.

“Screening is one of the biggest shifts in lung cancer care and control since 1964,” says Jamie Studts, principal investigator for Kentucky LEADS, citing the year of the U.S. Surgeon General’s groundbreaking report linking smoking and lung cancer. “We now have the hope of creating a large community of lung cancer survivors.”

By presenting a comprehensive approach that educates patients and engages them in managing their complex condition, Kentucky LEADS is creating a model that others could replicate. Connie White, deputy senior commissioner of clinical affairs for the Kentucky Department of Public Health and a member of the Kentucky LEADS Community Advisory Board, believes the program’s innovations could ripple out beyond Kentucky and even beyond lung cancer. This could drastically change the treatment of chronic disease, she says.

Progress in lung cancer detection and treatment has been, at best, incremental. The 1964 Surgeon General’s report was the first federal milestone. “At that time, the five-year survival rates for lung cancer were 13 percent,” Studts says. “We’re at 18 percent now.”

dr weaver in lab coat

Dr. Tony Weaver

Five percentage points in 50 years. Survival rates for other cancers have risen by double digits over the same time. Funding for research on other cancers is exponentially higher, relative to the number of deaths. Only 6 percent of federal dollars going to cancer research is spent on lung cancer. And yet, before the sun sets today, lung cancer will kill more Americans than you could fit on a jumbo jet.

Given the limited progress, many people are skeptical when they learn the hopeful reality: “This is a devastating disease that actually can be picked up early,” Weaver says. “How can you survive lung cancer? If you get to it early, you can cut it out. You can get it before it spreads.”

Before it has spread, a malignant tumor can be surgically removed. New, less-invasive procedures make surgery an option for more and more patients. The key is catching it early, because once symptoms appear it’s usually too late. After lung cancer has metastasized, remission is rare. Currently, of the more than 4,800 new cases of lung cancer diagnosed in Kentucky every year, nearly 80 percent are late-stage.

“For someone who gets a late-stage diagnosis, the survival rate is very low, about 4 percent,” says Angela Criswell, medical outreach manager for the Lung Cancer Alliance. “When you find it early, when it has not spread, the survival rate is 55 percent.”

Within the past few years, scientists have confirmed a proven method of early detection: lung cancer screenings. A national lung cancer screening trial showed that low-dose CT (LDCT) scans—more sophisticated than an X-ray but not as invasive as an MRI—can effectively catch lung cancer in its early stages. The direct result: With annual screenings, mortality was reduced by 20 percent (compared with those who received chest X-rays only).

“The indirect result is optimism and hope,” Studts says.  

"We now have the hope of creating a large community of lung cancer survivors." -Jamie Studts, principal investigator for Kentucky LEADS

London, a town of 8,000 in southeastern Kentucky, is home of the World Chicken Festival and a 700-pound skillet. It’s also the county seat of Laurel County, where the rate of lung cancer death is 74.4 per hundred-thousand people. That’s significantly above the national average of 46 per hundred-thousand.

These are the patients of Dr. Melissa Zook, a primary care physician at a rural health clinic in London. As one of the first doctors to go through the Kentucky LEADS educational program for providers, Zook learned about the many resources available to her high-risk patients, including LDCT scans, new options for treatment and cancer treatment centers in bigger towns.

Every week, she sees men and women eligible for screenings: between the ages of 55 and 80, with a history of heavy smoking (a pack a day for 30 years, for example, or two packs a day for 15 years). Even if they’ve quit in the past 15 years, they may still be covered under the Affordable Care Act; but they have to opt in. 

It can be a hard sell.

“I try to get that message to my patients,” Zook says. “I tell them, ‘Lung cancer is survivable if it's caught early,’ but they don't believe me.”

Convincing smokers to get screened for lung cancer is a considerable challenge in a state where tobacco farming was not only an economic driver but also a source of cultural pride, like bourbon and fast horses. Roughly 14 percent of smokers here started lighting up before they could drive.

“I would love for lung cancer screening to be as easy and accessible as breast cancer screening is. And get people to understand that early detection saves lives.” –Dr. Melissa Zook

Rampant anti-tobacco campaigns warn Kentuckians that cigarette smoking is the number one risk factor, responsible for about 85 percent of all lung cancer deaths. (Radon exposure and family history also play a role, but smoking is the primary cause.) Despite this, the state still has the second-highest smoking rates in the nation (edged out recently by West Virginia). There are counties where 80 percent of young adults smoke. Where 20 percent of pregnant women smoke.

“It's such a complicated, deeply ingrained part of people's nature here,” Zook says. “Sometimes, I just have frank discussions with patients, and they absolutely are not willing to quit. They're like, ‘I know this will shorten my life, and I'm OK with that.’”

In rural areas like London, where 27 percent of the population lives under the poverty line, there are many barriers to healthcare. Low literacy levels, lack of transportation and budgets stretched painfully thin make it almost a hardship to be a good patient.

Topping off the difficulties are the psychosocial barriers that make lung cancer different from other cancers. The omnipresent stigma. The blame and self-blame. The survivor’s guilt. The hopeless resignation.

“I would love for screening to be as easy and accessible as breast cancer screening is,” Zook says. “And get people to understand that early detection saves lives.”

melerene on her balcony

Merlene Rodgers at her home

Merlene Rodgers sits in her kitchen, laughing with her daughter, Dani. Merlene is the lucky anomaly, the one whose symptoms showed before it was too late. 

Thirteen years have passed since Merlene announced her diagnosis in her newspaper column. She described the waves of emotions hitting her at that moment: 

On this, the first day of my knowingly living with cancer, it is not the disease I’m worried about. It is telling my family and friends just how vulnerable we are that tears at the soul.

“I immediately thought, of course, that it would be terminal. I did not know anybody with lung cancer who had survived,” she says now. “So I said, well now, we’ve got to start making plans.” She called a retired minister friend. “You’ve got to shoot me some Scriptures.”

The cancer was stage 2, still operable, and she decided to wait until after the holidays. The doctors removed one lobe from her right lung. Three months later, she was back at work. 

She went in every six months for follow-up screenings. It would save her life. Around 18 months after her surgery, a routine screening found a suspicious node in her other lung. This time, there was no cough.

“I had no symptoms. None. So had it not been for that CT scan, I would not have known there was something going on,” she says. “It was lifesaving, because I had nothing. I thought I had beat it. And then it came back.”

She still goes in for annual screenings. “If you know the risk factors, why wouldn’t you do this small thing? It’s not painful. You go in, lie down, smile if it’s a male technician, flirt a little bit, and get up and leave.” Her last screening, a month or two ago, turned up clean. Ten years clean.

A lot can happen in ten years. Hundreds of columns. A well-deserved retirement. Thousands of prayers. Ten Christmas mornings. One induction into the Kentucky Civil Rights Hall of Fame.

Thanks to lots of prayers and timely medical intervention, Merlene Rodgers can say something few others can—yet.

“I’m a lung cancer survivor. Twice over.”

A Survivorship Story :  Merlene Rodgers
The two-time survivor on how she grappled with her lung cancer diagnosis

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