Finding Friendship, Advocacy, and a Lung Cancer Community Through Comprehensive Genomic Profiling

Hilary lives in the Twin Cities area of Minnesota and loves cooking, traveling and the joy of spending time with family including her two children.

“I sometimes wish I had some cool hobbies, but this life keeps me busy!” she said.

One day, Hilary noticed a solid mass above her collarbone which led to chest x-rays and further scans showing a number of masses in her lungs, bones and brain. She had no respiratory symptoms and yet at the age of 37, she was diagnosed with stage 4 metastatic lung cancer.

“I thought it was the beginning of the end,” Hilary said. “I sat with my husband, and we cried together.”

Emily lives in North Carolina with her husband and enjoys gardening and spending time outdoors with her two dogs. A few years ago, she woke up the day after Thanksgiving with an unfamiliar pressure in her chest. After several months of experiencing a progressively worse cough without any actionable answers, she, too, was diagnosed with stage 4 metastatic lung cancer.

“I was devastated and completely shocked,” Emily said. “It was so isolating.”

Finding Answers and Allyship

Both in their 30s, Emily and Hilary had no prior signs of illness and never smoked—a stigma that has followed lung cancer for decades. While general lung cancer support groups offered some immediate solace, they struggled to connect with others who had their specific kind of lung cancer.

“I had this overwhelming support from family and friends, but I didn’t know anyone who had my type of cancer,” said Hilary. “Who has been through this? Where are their stories? At the time it seemed as though many online lung cancer communities and advocacy groups were for older individuals with a smoking history, and it didn’t feel like I fit in.”

Looking for answers during their initial diagnoses, Hilary and Emily each received comprehensive genomic profiling (CGP), the most thorough type of biomarker testing, which determined that they share the same rare form of lung cancer driven by a rearranged during transfection (RET) genomic alteration or fusion in the DNA of their cancer tumor cells. With this knowledge, they were able to have conversations with their doctors about treatment options for their specific cancer type.

A few months later after starting treatment, Emily learned of an organization called RETpositive that offers community support to patients with RET-positive cancer. She was initially hesitant to reach out.

“I was anxious that there would be other people who were in a different place with their health, and that was frightening to me,” she said.

Facing questions in the early days of initial treatment, Emily decided to join the RETpositive social media forum to ask people in the group about their experiences. Within 10 minutes, she received answers, including from Hilary who understood Emily’s unique situation through the common ground they shared.

“It was a flood of comfort,” Emily said. “I didn’t realize how much I was missing people, especially people my age who are going through the same thing. It made me feel connected, and I cried.”

The Bonds of the RET Community

RETpositive was started just a year earlier by Aliye, a trailblazer and neuroradiologist, who was also relatively young and healthy when she developed a cough that wouldn’t go away and, eventually, was diagnosed with lung cancer.

Her husband Chris distinctly remembers when they got her pathology report results back. “It was a bad dream moment, where the most awful thing you could imagine has happened, and you think you’re going to wake up,” said Chris.

Upon this news, “Aliye left no stone unturned,” said Chris, who began to do research of his own to better understand the cause of her lung cancer, all while continuing to raise their two young daughters and Chris also managing his business.

Looking to pinpoint the mutation that drove her disease, Aliye sought out CGP that identified her cancer as RET-positive. With this information, Aliye was able to enroll in a clinical trial for an investigational medicine.

“The doctors gave her less than a year to live,” said Chris. But that didn’t stop Aliye and four-and-a-half years later, she founded RETpositive, which aims to improve the quality of life and life expectancy of RET-positive cancer patients by raising awareness, providing community support and advocacy, and funding medical research for RET-driven cancer.

Hilary, who was one of the first people to join the group led by Aliye, said, “Finally, I felt like there were people my age with similar health backgrounds that had the same questions I did.”

After crossing paths through RETpositive, Emily and Hilary formed a unique friendship and remarkable bond. Both women found comfort, empowerment, and a sense of solidarity in each other and their safe space within the lung cancer community due to the groundwork Aliye laid that, these days, Chris continues to build upon.

A Legacy of Advocacy

Aliye passed from lung cancer in 2022. Dealing with the immeasurable toll of losing a loved one while needing to remain strong for his daughters, Chris wasn’t sure if he could carry on the work she had started.

Soon after, members of RETpositive asked him to attend a board meeting and speak to Aliye’s vision for the future of the organization, and he found himself continuing to attend meetings thereafter.

“At first, I thought it might not be something I wanted to do because of how hard it would be,” he said. “But it was not difficult to continue giving back. It was wonderful.”

Today, Chris sits alongside Hilary and Emily on the board of directors, honoring his wife’s legacy together by advocating for the RET-positive lung cancer community.

Advocating for a Path Forward with Biomarker Testing

The information and support provided by RETpositive empowers people who live with this rare form of lung cancer, said Emily, giving them the information and confidence to find the answers to their questions and advocate during treatment.

“You don’t feel like you’re being batted around—you have agency,” she said.

The community also helps alleviate another challenge of having a rare cancer: feeling isolated and alone.

“You feel so lonely, even though people are trying to help you,” said Hilary. “It meant everything to me to find community.”

After a cancer diagnosis, you are not helpless, Emily, Chris, and Hilary all say.

“For anyone who has a lung cancer diagnosis, getting biomarker testing done is so important,” said Hilary.

For Emily and Hilary, getting comprehensive genomic profiling led to community, thanks to Aliye and Chris’ work, and to finding people going through similar experiences. For Chris, testing gave him more time with Aliye – more holidays, more soccer games and more moments together with their daughters.