Diane Legg appears to have an idyllic life. She recently celebrated her 50th birthday and shares her Amesbury home with her husband of 17 years, David, and their three boys. What goes unseen is the cancer that is growing in her lungs, a disease that may ultimately prove fatal.
Still, Legg considers herself lucky. It has been eight years since doctors first determined that a small nodule in her left lung was cancerous.
“Eighty-five percent of people are diagnosed late stage, and 85 percent of people diagnosed with lung cancer do not survive five years,’’ said Legg, who will ride in her first Pan-Massachusetts Challenge this weekend, making the 84-mile cycling trek on the Wellesley-to-Bourne route Saturday in support of the Dana-Farber Cancer Institute.
“Most of the people who do die [from lung cancer], die within a year.’’
In 2004, Legg was a top saleswoman for General Electric's plastics division, covering eastern New England. Today, she is cochairwoman for the New England chapter of Lung Cancer Alliance, and founder of the Shine a Light on Lung Cancer vigil held in Boston every November, and the nonprofit LUNGStrong Inc.
“There's a lot of disparity between funding for lung cancer and other cancers,’’ said Legg. “Lung cancer accounts for a third of all cancer deaths. It's huge. Twice as many women die of lung cancer than breast cancer, which was shocking to me. I had no idea. I was always afraid of getting breast cancer. Never did I ever think about lung cancer.’’
Legg's third son, 8-year-old Will, was less than a year old in 2004 when Legg lifted him out of the crib, straining her back. To rule out a pulmonary embolism, a doctor ordered a CAT scan, which revealed the nodule. One pulmonologist put Legg on a series of antibiotics, but then ordered a biopsy when the nodule remained unchanged.
“Even going into the biopsy, I was being reassured that it was most probably not malignant,’’ she said. "So it was shocking when Dave and I got the call. It was a Monday night — the Red Sox were playing the Yankees in that infamous playoff series — and it was 9 o'clock at night when I got the telephone call from my pulmonologist. He said, ‘Is Dave there? Can you put him on the phone with you, because what I'm going to tell you is not good.’ That's how we found out that I had lung cancer.’’
Diagnosed with Stage I lung cancer, Legg underwent a lobectomy, which removed the top half of her left lung, and four rounds of chemotherapy. Earlier that same year, a close family friend, Susan Levinsky, was also diagnosed with lung cancer. A mother of three and a nonsmoker, Levinsky died while Legg was undergoing chemotherapy.
“Susan's journey was, unfortunately, very typical, and very devastating, to me and to her family,’’ said Legg. “I turned her loss into advocacy.’’
Most lung cancer patients are diagnosed late stage, said Legg, “because there's no nerve endings in your lungs. You can't feel the cancer. A lot of other cancers, you can feel a lump, something, or pain. But one of the reasons lung cancer is so deadly is because it's diagnosed at late stages 85 percent of the time.’’
A year after her diagnosis, Legg asked her husband, “'Why am I still here, when so many aren't?”
“It was at that point I said we need to spread the word to raise awareness. I made a commitment that night that I would be Susan's voice, since she didn't have one anymore. And since then, I've become many, many other people's voices.’’
Dave Legg said his wife “has tremendous faith, which has helped her mentally rise to this challenge. She has the natural ability to persuade people; she’s very determined.’’
Legg contacted the Lung Cancer Alliance in Washington, D.C., to volunteer. What she found, she said, was that lung cancer patients face not only a grim prognosis, but also an overriding notion that the disease is self-inflicted. Because lung cancer is often related to tobacco use, many patients find that there’s a perception they are responsible for the disease.
“There's a stigma to it, and because of the stigma, it's been overlooked and underfunded by our government,’’ said Legg. “The survival rates for lung cancer have remained unchanged since [PresidentRichard] Nixon declared war on cancer in 1971. Nothing changed in over 40 years. I felt that was such an injustice.’’
Legg says smoking is also responsible for other cancers that don’t face the same stigma. “For some ridiculous reason, [people think] even if you did smoke, you deserve this disease,” she said. “It makes no sense to me.”
Two years after her initial diagnosis, Legg's cancer returned. At that point, she decided to leave her job of 21 years at GE, and immerse herself into her advocacy work. Lung cancer awareness, she said, has become the family's mission. Legg's two older sons — 16-year-old Dean and 13-year-old Cole — accompanied her to Washington earlier this year to lobby for the Lung Cancer Mortality Reduction Act.
“I'm not the only one who has cancer in my family,’’ said Legg. "We all carry it in a different way; it just happens to be in my body.
“With the kids, they carry it in their own way, and I'm very, very proud of my kids, because they've stepped up in a lot of different ways,’’ she said. “When I was first diagnosed, they were so young. Now that they're older, it's a different conversation. I have been open with them, and because of my advocacy, they've been extremely exposed to it, and probably wiser about lung cancer than most people are. They get the situation.
“I'm a very spiritual person, and I am not ready to go anywhere. But I'm not afraid to die, and I've told that to my kids,’’ she said.
Nancy Borstelmann, director of the Family Connections program at Dana-Farber Cancer Institute, lauded Legg's approach.
“There's been a culture shift. There's more of an appreciation for open communication, and that important issues, like a parent's illness, need to be discussed in a thoughtful, age-appropriate way to help kids cope as well as possible,’’ said Borstelmann.
“If there isn't that conversation, it often leaves kids to just be alone in their own worries, trying to figure out what's going on.’’
Legg's cancer, called the EGFR mutation, continues to grow, albeit slowly, and is now in both lungs. There is a targeted therapy available through the Dana-Farber Cancer Institute, but it has a limited success window, so Legg has decided to keep it as a last resort.
Instead, she focuses on her fitness. She has run four half-marathons, and this year she will join thousands of cyclists riding the various PMC routes. On June 9, as part of PMC Day at Fenway Park, she threw out the first pitch prior to the Nationals-Red Sox game.
“Given the progression of my disease, I looked at Dave and said, ‘I feel great. If I'm going to do this, this is the year I should try.’ It's very hard to predict how I'm going to feel a year from now. I decided to bite the bullet and do it.’’
David Legg began riding the PMC with a friend four years ago, and then helped form Team LUNGStrong with his wife. The team last year had 16 riders and raised more than $100,000 for the Lowe Center of Thoracic Oncology at Dana-Farber Cancer Institute. This year, they have 30 riders (including WCVB-TV news anchor Heather Unruh), and hope to raise more than $250,000.
Asked what her goals are for this weekend's ride, Legg laughed and said: “To survive.’’
“My goal is to make it to the beer tent,’’ she added.
The quip is revealing, showing that while Diane Legg's lot is far from idyllic, she has not surrendered her ideals.
“For us, the whole thing is we live our lives the best we can, and we never lose hope,’’ she said.
Brion O’Connor can be reached at firstname.lastname@example.org.