Published on October 14, 2020
Jill Feldman’s Story
Hear the first-hand story of a lung cancer survivor and patient advocate who learned to find hope and take action in the face of a cancer diagnosis. Jill Feldman was diagnosed with 1A lung cancer in 2009, which was followed by a treatment journey filled with twists and turns. Read her story and watch the segment above to find out how she navigated her lung cancer treatment, and where she is today. She will also share helpful advice for fellow lung cancer patients.
Lung Cancer Survivor and Patient Advocate
I’ve lost a lot to lung cancer, starting with two of my grandparents within weeks of each other when I was just 13 years old. Six months later, my dad was diagnosed with the disease and died three months after his diagnosis. When I was 28 years old and pregnant with my second child, I lost my mom to lung cancer. And my beloved aunt Dede just a few short years after that. Losing five family members to this disease was heart-wrenching.
And then, in 2009 following a routine scan, I was diagnosed with 1A lung cancer myself. It started as a nodule on one of my periodic scans for the disease (I was, and still am, an advocate for early detection). After several years, things took a turn and I needed to undergo treatment.
Considering everything I’ve lost to the disease, after my diagnosis I could have resigned myself; I could have given up, facing that long list of loved ones lost.
But I didn’t give up.
In fact, the opposite happened. Seeing how the disease affected my family first-hand made me even more motivated to fight against it. This has become a galvanizing force for me in my desire to help others, which I continue to do today as a lung cancer advocate.
Navigating a Turbulent Treatment Journey
My treatment journey is a story in itself as well, with its own set of twists and turns.
Following my initial diagnosis, I underwent surgery and was considered cured. At the same time, I started taking erlotinib off-label. There was a clinical trial with the drug happening on the East Coast (about using the drug in adjuvant therapy) that I couldn’t participate in — technically, I wasn’t even a candidate for the therapy — but I knew I had to do everything in my power so my kids wouldn’t have to go through what I went through.
And for a good deal of time, it worked. But approximately eight months after I stopped taking erlotinib, the cancer returned. After another surgery two and a half years later, there was nothing I could do to lower my risk of recurrence.
Unfortunately, there was new cancer growth just a few months after that surgery found on my post-operative scan. I opted not to resume taking erlotinib (which was at that time the only systemic therapy available), as the side effects were detrimental to my quality of life. Instead, I opted for stereotactic body radiation therapy (SBRT), which I relied on for five years before finally returning back to systemic therapy with osimertinib (Tagrisso). Now, I no longer feel overwhelming fear from not having treatment options. I feel like I have a solid treatment option that works for me.
I won’t lie to you — it’s been a long and sometimes circuitous road managing my treatment and myself through all of this, and there are a few things I want other patients to take away from my story.
First, don't give up on treatments. If one — or even several — don’t work well with you right away, talk about other options and look into clinical trials. It’s also important to keep that glimmer of hope alive as you think about research and treatment progression. When I first began my treatment, osimertinib wasn’t even an option.
Even more, I’ve been able to accept my treatment as a success story, even if it didn’t seem that way to me for a while. As a regular champion of early detection, I wanted so badly to be able to say I was cured by relying on it. And while that might not be the case today, early detection has still afforded me treatment breaks and flexibility and truly improved my life.
My biggest successes, however, come from being able to achieve several important personal milestones. When my father passed away, I was only a few weeks away from graduating 8th grade. Following this, my first goal was to see all four of my children graduate 8th grade. Not only have I accomplished this, but I’ve also even seen two of them finish college.
And while my children mean the world to me, I’ve also been able to find intensely meaningful work in lung cancer advocacy. Prior to my diagnosis, I served on the board at LUNGevity, but later stepped down. Not because it wasn’t a fantastic group, but because I wanted to advocate as broadly as possible, and there are so many ways to do so. From helping newly diagnosed families to speaking at conventions, to serving as a research advocate, to helping in the development of new treatments, the possibilities are incredibly vast, and incredibly important as well.
As I look ahead to the future, I focus on how I want to live. For me, quality of life is most important. Yes, I want to survive — but I want to live and enjoy life, too.
By Jill Feldman
Transcript | Lung Cancer Patient Story: Finding Hope and Taking Action
How Did You React to Your Lung Cancer Diagnosis?
Jill Feldman: My biggest fear was becoming a reality. I was following in my family's footsteps, and there was nothing to really convince me the path would change.
When I was 13, my dad and two grandparents died of lung cancer, and then when I was in my 20s, both my mom and my aunt died of lung cancer. And at the time, there wasn't any research on hereditary lung cancers, but I knew that the familial lung cancer wasn't just a coincidence.
I thought I knew what it meant to be diagnosed because I knew people who had cancer. I had family members who had cancer. I hate to say it, but it was a death sentence back then. It's not like that at all.
What Should Other Lung Cancer Patients Know?
For any cancer at this point, there have been so many advancements in cancer research, and in treatments for patients, and in support for patients. Patients and their loved ones are able to connect with others who have had that lived experience, and there is nothing more powerful than that.
When I was first diagnosed, one of the most important things to me was not to be defined by the cancer. I knew it was part of my identity, but I wanted to find myself outside of it as well. And the camp that I went to as a child, a couple of my kids were going to. And I decided I was going to work at camp.
So physically, obviously, I can never escape from the cancer, but emotionally, I can, and I can put my time and my energy into the work that I do at camp into the campers. And it helps with me feeling like I am living somewhat of a normal life.