Bonnie J. Addario: From patient to advocate: how a diagnosis changed my life

“These were the words we had heard from multiple doctors when Bonnie, my mom, was diagnosed with Stage IIIB NSCLC in 2004,” recounts Danielle Hicks, Chief Patient Officer at GO2 Foundation for Lung Cancer. “The options we were given, or not given, felt incredibly unfair.”

Bonnie and Danielle are not alone. Every year, 2.2 million people are diagnosed with lung cancer and have to deliver this devastating news to loved ones.1 Lung cancer is an aggressive disease causing more deaths per year than breast, prostate and colon cancers combined.1 Approximately 50% of people with non-small cell lung cancer (NSCLC), the most common form of lung cancer, are diagnosed with early or locally advanced (Stage I-III) disease.2

Bonnie, now Co-founder of the GO2 Foundation for Lung Cancer, recalls those early days after the initial diagnosis.

“Even though they (grandkids) were very small, I just knew they sensed something was wrong.” This initial shock soon turned into a fierce determination to fight. “Thinking that I might not be around to raise them made me even more committed to change this cancer and its outcome. I have lost four family members to this disease and was determined that this was not going to happen to another one.”

Bonnie knew she could not do this alone; it would take the support of her family and a full team of healthcare specialists to redefine her care journey.

“‘There’s nothing we can do’ was simply not an option… for any of us, so we went out in search of our own plan, a survival plan,” added Danielle, “I was very fortunate to have a multidisciplinary lung cancer team that included an oncologist, a pulmonologist, a surgeon, a radiation oncologist and more, all willing to fight with us,” said Bonnie.

Working closely with a multidisciplinary team (MDT) of lung cancer specialists helped Bonnie to be informed and involved in her care, to plan an approach that was right for her. Many hospitals now take an MDT approach to help ensure each person diagnosed with lung cancer receives the therapy and treatment plan that’s right for them.

Using personal experience to empower others

Bonnie was fortunate to win her battle with lung cancer and her experience inspired her and her daughter to dedicate their lives to helping others facing a similar fight.

The sooner cancer is diagnosed, the greater the chance that treatments can be effective. However, Danielle explains that the associated stigma and perceived lack of options delays many people from seeking medical advice. “General awareness about lung cancer is grossly lacking,” said Danielle.

“People need to know the facts, that you don’t have to smoke to get it, that screening may be available in certain countries for those that qualify and that if someone is diagnosed, there are options available now that are targeted towards an individual’s specific lung cancer type.”

Bonnie adds, “The last thing anyone needs when they’re diagnosed with any cancer is feeling like they are to blame and somehow deserve the negativity that goes with it. People with devastating diseases like cancer deserve love and care, not blame and shame. I heard from a woman who never smoked that she told people she had breast cancer rather than lung cancer, just to avoid the negativity.”

Through their work at the GO2 Foundation for Lung Cancer, Bonnie and Danielle hope to ensure that information is readily available and easy to understand, so that those living with and those treating lung cancer are supported.

“Lung cancer patients are often treated in the community hospital environment where physicians are expected to treat many different types of cancer, including lung cancer,” said Bonnie. “We must continue raising awareness about the disease at every stage and support healthcare professionals by ensuring they have sufficient resources so that patients receive treatment early, but this is not always possible.”

Towards a better future

Not long ago, lung cancer survivors were rare as most people didn’t live more than a few years past their diagnosis. But as new treatment options have become available, the number of people who live five or even ten years after a diagnosis is growing.

Bonnie concludes, “For the first time in years, there’s hope – in big capital letters. The conversations that I have with people who are newly diagnosed are now truly hopeful. Lung cancer isn’t just one disease anymore. We know there are different genetic changes in the cancer that have opened the door to new medicines. This is redefining what it means to have lung cancer and bringing the day when it can be cured closer to reality.”

Roche is working to redefine lung cancer. While research has transformed the lung cancer landscape, numerous barriers still prevent patients from receiving the best possible care. Together with our partners, we are committed to delivering solutions that address ongoing challenges for people like Bonnie at every stage of their journey.