When a beloved wife and mother was diagnosed with lung cancer, her family sought out the best care at Mass General and worked tirelessly to raise public awareness and research funds.
Barbara Densen and her daughter Arielle shared a wish to raise awareness and funding for lung cancer.
Barbara Densen and her daughter Arielle shared a wish to raise awareness for lung cancer.

Lung cancer is a lonely disease. That’s why Rob Densen and his daughter Arielle are teaming up with the Mass General Cancer Center to raise awareness and funds for lung cancer—the disease that took the life of Rob’s wife and Arielle’s mother, Barbara Densen, last year.

Although Barbara “never smoked a cigarette,” Rob says, she felt deeply the stigma of smoking that isolates so many lung cancer patients and their caretakers. Because people are often embarrassed to come forward, he explains, “There is no sense of community. You’re on your own.” For the same reason, funding for research and treatment is lacking and sympathy for people with the disease is hard to come by.

All Alone in a Crowd

“People tend to brush off lung cancer thinking that people brought it on themselves,” says Mass General thoracic oncologist Lecia Sequist, MD, who treated Barbara with targeted therapies after she developed resistance to a drug that had helped her for two years.

It was the groundbreaking research on targeted cancer therapies that attracted the Densen family to Mass General.

Negative attitudes about lung cancer translate to very low funding levels for cancer research, she says. For example, for every woman who dies of breast cancer, the government spends $26,000 for research compared with less than $1,000 for every woman who dies of lung cancer.

Remarkably, while funding lags, important findings by Dr. Sequist and colleagues—including Alice Shaw, MD, PhD, and Jeffrey Engelman, MD, PhD—in Mass General’s Center for Thoracic Cancer have changed the landscape for the better. In a new study published in the journal  “Science,” the Mass General team showed success in shrinking drug-resistant tumors using combinations of targeted therapy drugs on cells sampled from MGH patients. They hope to eventually test the drugs in human patients using these or other combinations to shrink drug-resistant cancers.

It was their groundbreaking research on targeted therapies that attracted the Densen family to Mass General for Barbara’s treatment and motivated them to set up a fund called the “Targeting a Cure for Lung Cancer Fund,” after her death in 2013.

The funds will help researchers develop drugs that target specific mutations that drive lung cancer. Donations between now and the end of the year will be partially matched by an anonymous donor.

Shock, Hope and Disappointment

Arielle Densen, left, with Lecia Sequist, MD. Arielle was honored as an advocate at the one hundred gala this year.
Arielle Densen, left, with Mass General thoracic oncologist Lecia Sequist, MD. Arielle was honored as an advocate at the one hundred gala this year.

Arielle was 26 and living in Chicago when her mother was diagnosed with lung cancer. “We used to talk on the phone every day,” Arielle says. “She was a healthy, beautiful, caring nonjudgmental mother and her diagnosis was unbelievably shocking.”

Barbara, who worked as a school librarian in New Jersey, learned she had the EGFR gene mutation, the first mutation identified for lung cancer at Mass General in 2004

For a while, with the help of the targeted therapy Tarceva, Barbara lived a relatively normal life, seeing her son, Sam, graduate from high school, taking a family trip to the Grand Canyon and walking Arielle down the aisle at her wedding. But after two years of successful treatment, her cells became resistant to the drug—a common problem.

Targeted Therapy Benefits

At that point, Barbara and her family began making weekly trips to Mass General to participate in clinical trials with Dr. Sequist. As part of the clinical trials, Barbara was able to benefit from two additional targeted therapy drugs. She saw some success but eventually, her cells failed to respond to available therapies.

Arielle recalls warmly that toward the end of Barbara’s life, she never needed to rely on hired nurses at home because her three children and her husband were always there to care for her.

Taking a Stand Against Lung Cancer

“We are hopeful that the advances in targeted therapy research made possible by this fund will give thousands of families the most precious gift of all: more time together.”

Even in the midst of Barb’s battle with lung cancer, Rob and Arielle used their skills as professional “strategic communicators” at their New York-based company, Tiller, to create a public awareness and advocacy campaign called “Leaders of the Lung Cancer Free World.” “It was our hope to take a quick, large stride forward in the fight against this devastating and under-attended to disease,” Rob says.

That fight has continued after Barb’s death, both with Leaders and, now, with the Targeting a Cure for Lung Cancer Fund. “As surviving family members,” Rob explains, “we feel we have an obligation to stand up. We are hopeful that the advances in targeted therapy research made possible by this fund will give thousands of families the most precious gift of all: more time together.”

Dr. Sequist adds, “We are immensely appreciative of the Densens’ support. The funds have allowed us to set up a consistent program to test the cells of each lung cancer patient to look for changes that contribute to drug resistance.“

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