Ros, tell us about your personal connection to lung cancer.
My connection to lung cancer ends, or starts, because of my daughter, Jillian. She was a Registered Nurse (RN) working at Jackson Memorial Hospital’s Neurosurgical Intensive Care Unit. She was three-quarters of the way through her Masters (Nurse Practitioner) when she was diagnosed with lung cancer in July 2012 at age 28 and passed away 10 months later. She received her degree posthumously in December 2013. Along with Jillian, both of my in-laws (Jillian’s grandparents) had diagnoses of lung cancer. My father-in-law’s (cancer) was related to environmental factors and he passed away in 1992. My mother-in- law was diagnosed in October 2010 and passed away 6 weeks later. Her cause was attributed to smoking, but with Jillian, who was young, active and healthy, it was completely unexpected.
Tell us about Jillian’s Dream. How did it start?
Jillian wanted to make a difference and pay it forward, which was why she participated in a clinical trial. She knew that research was the only way to defeat this disease. She also knew there was not much that would help her. I wanted people to hear her story, change the face of lung cancer to that of a young, active, healthy woman. In my mind she was exceptional, what happened to her was terrible and people needed to know about lung cancer. I followed her lead believing I could raise a lot of money to help fund lung cancer research and in doing so we would get closer to finding a cure. That was Jillian’s dream – to one day find a cure. In her absence and with her in mind, I started Jillian’s Dream. Raising money in her memory would be continuing what Jillian started: knowing how vital research was and remains.
What has Jillian’s Dream done for you personally and for lung cancer awareness?
Beyond raising money for awareness and research, Jillian’s Dream has given me fulfillment to know that Jillian continues to make a difference well into the future—advancing not only the direct search for a cure/treatment for lung cancer but also lung cancer awareness. Raising awareness is critical in order to balance out funding and perceptions that people with lung cancer deserve it because they smoked. The lack of funding and awareness has really stymied progress but we are getting it turned around. Anyone can get Lung Cancer. In addition to media appearances, I have spoken to and become a part of the Tampa Chamber of Commerce and addressed Rotary Clubs on occasion. I have also supported national organizations with discussions, presentations and blogs talking about Jillian and my experiences. I look for every opportunity to get the message out.
What did you know about lung cancer before it affected your daughter?
I didn’t know much about lung cancer prior to Jillian’s diagnosis. I knew that in most cases people didn’t know they had it until it was too late. In regards to my father-in- law, his only treatment option was standard chemo, which he didn’t tolerate well. He passed away six months after diagnosis. My mother-in- law didn’t want any treatment because the cancer had spread. That was the total knowledge I had. With Jillian’s diagnosis though, I earned a “Google, M.D.,” and gained more knowledge about lung cancer.
What do you think is the biggest misconception about lung cancer? And why do you think it’s the least funded?
I think the biggest misconception is that the majority of people believe smoking is the only cause. They find the habit disgraceful, which leads to creating a stigma. It remains the least funded because of this stigma. This has been prohibiting equitable funding since at least 1971 with the passage of the first National Cancer Act. The public’s perception is: smoking causes it, smoking is a bad habit, and if you choose to smoke, you deserve what you get. Lung cancer is not pretty, pink or sexy. Talking about lung cancer makes most people very uncomfortable. It is real, very deadly and anyone can get it.
Can you explain how important research is in the fight against lung cancer?
In order to better treat patients with lung cancer, it has to be understood. The only way to do that is through research. Researchers look at what cancer is—cells that have mutated for one reason or another—and ask Why? How? When? They ask what if? They collect data in hopes that they can find the answers. Simply put they play detective. In order to double lung cancer survival and make this disease chronic, we need to ask those questions and we need the innovative researchers to think outside the box to find the answers.
Have you seen progress in the fight against lung cancer in recent years?
Yes. And it’s amazing. I thought I would be angry at the progress being made today because of what happened to Jillian. But now I realize that she played a part in all the advancements that are happening. Since Jillian’s diagnosis there are more and more patients getting their tumors tested for gene mutations, new therapies have become available; 7 in the last 6 months. Targeted therapies are now being tested for more known gene mutations, there is immunotherapy, the ROS1 gene mutation now has a drug that is working for those patients. Additionally, researchers are moving quickly. They are looking everywhere and asking questions never associated with lung cancer or cancer for that matter; from how to better treat patients, how to stop gene mutations, metastases, how to detect lung cancer early. It’s mind-boggling. And it is bittersweet too. But today, more so than even 3 years ago, there is greater hope for lung cancer patients.
Do you think people are becoming more aware of the number one cancer?
I wish I could say yes. In truth, there hasn’t been much progress in changing people’s biases. I still get the question, “Did she smoke?” when I talk about Jillian. But then I have an opportunity to turn that question into a learning opportunity by talking to them about what lung cancer is and isn’t. We are making progress one person at a time but it’s slow.
If you had a call to action for everyone reading about you and your mission about lung cancer awareness, what would it be?
I’d take my cue from Jillian. We had a conversation a short time before she passed. She said “Go big or go home”, “Be Bold” and “think outside the box.” My call to action would be first to take Jillian’s lead and determination to fund the critical research necessary to meet the goals of doubling survival and making lung cancer chronic. My call would include a call to all the major lung cancer organizations to sit down together and get our consistent and singular message out into the world: Plain and simple – anyone can get lung cancer but together; we are stronger than lung cancer. Moving forward, we hope to advocate more on Prelude’s behalf and help in any way we can to raise awareness, educate people and raise more funds for seed grants that are vital to lung cancer research. The bottom line is that no one deserves lung cancer and we need to get to the point where surviving this disease is expected and not the exception.