I was diagnosed with stage 4 non-small cell lung cancer on December 26, 2013. As a healthy, non-smoking woman in my 40’s, my neck pain and elbow stiffness was initially written off as caused by stress and overuse of my iPad when planning my son’s bar mitzvah! After several months of visits to my primary care physician, two physical therapists, two orthopedists and even a rheumatologist, the true cause of my increasing discomfort was discovered to have spread from my lungs.
It was difficult and time-consuming to visit numerous doctors and fail to find an answer to what was bothering me. Along the way, I had an MRI done of my neck which I was told only showed mildly degenerating disks, consistent with age-related wear and tear. My elbow was diagnosed as tennis elbow after an X-ray showed nothing, but when it didn’t respond to physical therapy, I received cortisone shots twice. Initially, my neck responded to physical therapy and my arm responded to the cortisone shots, but eventually these effects stopped lasting. Finally, my second orthopedist ordered an MRI of my elbow and sent me to a rheumotologist. The rheumotologist ordered numerous blood tests and determined I did not have rheumatoid arthritis. The MRI, however, revealed a mass in my elbow. I then went to an orthopedic oncologist who told me that he was sure the mass was benign and ordered a biopsy. I was shocked when the biopsy results came back positive for adenocarcinoma! I was next scheduled for a PET scan to find the origin of the cancer.
The orthopedic oncologist was the one who diagnosed me with lung cancer and since it was between Christmas and New Year’s, there wasn’t anyone available to meet with me further. He referred me to a thoracic oncologist and sent me on my way. He didn’t seem to know much about lung cancer and from the responses to the questions I asked, it seemed like my prognosis was pretty dismal.
Fortunately for me, I have a friend who is very involved in LUNGevity here in Chicago. She had been talking about her work with LUNGevity for years with me, but I never paid too much attention because I didn’t feel that it would ever apply to me. She directed me to another non-smoking woman about my age who lives near me and has been personally affected by lung cancer all her life. She had several family members die from lung cancer, joined the board of LUNGevity in its early days, and was diagnosed with lung cancer herself 6 years previously. It turns out we had numerous mutual friends and we talked on the phone for hours. Through her, I was introduced to the somewhat overwhelming lung cancer “vocabulary” and learned that my age and non-smoking status made me a likely candidate for a mutation that could be treated. One of the most valuable things she told me was not to rely on the statistics, because 5 year statistics always are at least 5 years old. She told me about new developments and basically gave me my hope back.
This same woman emailed the oncologist whom I have been seeing ever since and got me an almost immediate appointment. I was called later that day by the oncologist’s nurse and told that molecular testing had been done at the time of my biopsy and I had an exon 19 EGFR mutation. Paperwork was immediately started so that I could begin afatinib, an oral targeted therapy drug, as soon as I met my oncologist. The nurse told me that my oncologist was prescribing afatinib, which had recently been FDA approved, for all of her new exon 19 deletion EGFR patients, and believed it worked better than erlotinib, the current standard, for them.
When I went to my first oncologist appointment, I had a brain MRI and found out that I also had 8 tiny mets in my brain and this led to a visit with a radiation oncologist. I also met with a neurological surgeon to discuss my neck, which actually turned out to be my most serious condition, since the tumor in my neck had eaten away so much bone that my cervical spine was in danger of collapse. Between having scans, meeting twice with my oncologist, seeing the neurological surgeon and the radiation oncologist, I spent a very long day at the hospital. There was lots of discussion among all of the doctors about what should happen first — neck surgery, brain radiation, or targeted therapy with erlotinib. After thoroughly reviewing all the input, my oncologist finally made the decision to start the erlotinib and postpone neck surgery and brain radiation in the hope that the erlotinib would take care of the lung mass, bone mets, and brain mets. I left Northwestern wearing a neck brace in concession to the neurological surgeon’s concerns. I was overwhelmed, but felt that my new thoracic oncologist was extremely thorough and knowledgeable. Well, everything worked out extremely well. I had very frequent follow-up appointments for the first few months, and my scans showed that the brain mets disappeared, bone grew back in my neck, and my lung mass shrunk. This has remained the case for almost 3 years and I have continued to take erlotinib. My oncologist is wonderful and she answers any questions that I have. I trust her completely. I don’t know where I would be today if it wasn’t for LUNGevity and my oncologist’s office.
I have continued using LUNGevity resources for support and I have met numerous other lung cancer survivors through LUNGevity. For the past three years, I have fundraised for lung cancer research through my participation in an annual LUNGevity walk called Breathe Deep North Shore with my friends and family and other lung cancer survivors. My personal team has raised more than twenty-thousand dollars for lung cancer research over the three years. My friends and family have been overwhelmingly supportive of me. I also have attended LUNGevity’s Hope Summit in Washington DC twice where I met many lung cancer survivors and came away with a great sense of hope and optimism for the future. I moderate a Facebook LUNGevity group that caters to survivors with EGFR mutations and acts as a place to share news of upcoming new developments in research.
As time has gone on, I have become more involved in lung cancer advocacy and helping others. I act as a mentor for another woman diagnosed with EGFR positive lung cancer who takes the same medication I take. Through LUNGevity’s Hope Summit, I was able to connect with representatives of a pharmaceutical company that makes a version of the drug I am on, and I have helped them by providing them with my patient perspective through several speaking engagements. I was invited to talk at an internal oncology department meeting at the American Society for Clinical Oncology (ASCO) in 2015, was the keynote speaker at their annual sales meeting in 2016, and worked with their public relations department to create a video of my experience. I have recently applied and been accepted as a Consumer Reviewer for a Department of Defense program that review lung cancer research proposals for funding.
I am not a formal support group kind of person, so I have not investigated that option and neither has my husband. We both talked to separate therapists about our feelings post-diagnosis, which was helpful. I have two teenage boys who understand that my cancer is not curable, but is treatable. Due to the medicine I have taken for the past 35 months, I have been able to live a normal life with very few side effects. I have no breathing issues and haven’t since the beginning. I pretty much treat my lung cancer as a chronic disease that can be managed.
One of the most difficult things is that most of my friends and acquaintances assume that I have been cured and am done with treatment. I try to educate people about my ongoing treatment but it is a difficult concept for many people to grasp. With most cancers, if you are doing well several years out from diagnosis, you are more likely to continue doing well. With stage 4 lung cancer on targeted therapy, however, the longer the targeted therapy works, the more likely it is that someday soon I will develop resistance to the drug I take. My close friends and family understand this reality, but many others do not. As a result, meeting and interacting with other longtime lung cancer survivors through LUNGevity has become increasingly important to me.
*NOTE: all branded drug names have replaced with generic drug names.