Am I Considered a “Long-Term” Survivor?

I recently attended an event for patients and caregivers at my cancer center in honor of November being Lung Cancer Awareness Month. While I was there, one of the thoracic oncologists (not mine) introduced me as a “long-term” lung cancer survivor to a newly diagnosed patient. That phrase has really stuck with me and given me pause for thought since this event.

According to statistics...

Am I truly considered a “long-term” survivor? Well, I guess so, or at least according to published statistics. On December 26th, I will reach the milestone of living with stage IV lung cancer for 6 years. According to LUNGevity Foundation’s fact sheet, only 23% of all people diagnosed with lung cancer will survive 5 years or more.¹ For those with stage IV lung cancer such as myself, statistics show 5-year survival in the single-digit percentages.

Don't put too much stock in statistics

Should we believe these statistics? Not really. One of the most important things I learned early on in my cancer journey was that 5-year survival statistics are always 5 years out of date! If you think about this a little, it completely makes sense. In order to know if a person survives for 5 years, he or she needs to be tracked for that amount of time. This means that any statistics we see today reference people who were diagnosed at least 5 years ago, prior to the availability of many of the new treatments that are currently being used. The impact of recent progress on lung cancer patients, including the use of immunotherapy, discovery of new targetable mutations, and increased success of combination therapies are not taken into account.

Unfortunately, despite being out-of-date, these statistics are very easy to find online and are frequently the first thing googled by patients and family members upon diagnosis. Doctors who do not see many lung cancer patients often believe these statistics as well. This can be very dangerous for patients. Even in today’s day and age, there are many people who do not receive treatment for their lung cancer depending on where they live or their socioeconomic status. Every day, many die due to a lack of knowledge about new discoveries and low hope for lung cancer treatment, reinforced by these bleak statistics.

Long-term isn't long enough

Getting back to the newly diagnosed woman I recently met at my cancer center...she was young, I believe younger than me. The first question she asked me when the oncologist finished her introduction and walked away was “how long have you been living with lung cancer?” I saw her face and could sense her fear when I said 6 years. I knew immediately that she was thinking 6 years wasn’t anywhere near long enough.

Hope lies in future treatments

For those of us being diagnosed at younger ages, twenty years or more would be a better indication of long-term survival because of everything we hope and wish to accomplish in our lives! I was quick to reassure this newly diagnosed woman that there are others who have been living with lung cancer for many more years than me and there was a lot of hope for future treatments. I’m looking forward to the day when 6 years is no longer believed to be long-term survival for lung cancer.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.