Should I Be Happy if I Have Stable Disease?
When I was first diagnosed with stage IV lung cancer, if someone had told me that I would be happy to hear the word “stable,” I would not have understood why.
What is my treatment goal?
My immediate reaction upon finding out that I had lung cancer was wanting to “get it out.” However, my lung cancer was deemed inoperable because, in addition to being in my lungs, it had also spread to my bones and brain by the time I was diagnosed. Surgery was not an option for me.
I had to change my goal from getting rid of the cancer in my body to learning how to live with it long term.
What stable means
In my five years since diagnosis, I have had times that the cancer in my lungs has shrunk — usually, the first few months after I started a new targeted therapy medication. I’ve been fortunate that the metastases in my brain disappeared and my bone mets healed over at the beginning of my treatment, but most of the time I have been told at oncologist visits that I have stable disease. I have learned that stable is good! Although there is evidence of disease still in my lungs, stable means my treatment is working and my cancer is not growing.
NED and remission
At no point since my initial diagnosis have I reached the holy grail of “NED,” however. For those of you who aren’t familiar with this term, NED stands for No Evidence of Disease. When living with advanced lung cancer, NED means that there are no signs of cancer visible on any scans. Unfortunately, a status of NED is not the same as “cured” because in advanced lung cancer, there can always be microscopic cancer cells present that go undetected on a scan. These cells can start to grow again, leading to a recurrence. Thus, NED is not the same as cancer free.
In my five years as a lung cancer survivor, I have not been NED at any point. Since I have been stable for long periods of time, I am frequently asked if I am in “remission.” According to the National Cancer Institute, remission is defined as a "decrease in or disappearance of signs and symptoms of cancer."1 I am not completely sure if the word “remission” accurately describes my cancer status. I’m still in active treatment and I take medication every day to suppress my lung cancer, so I don’t feel that it has decreased in seriousness due to this requirement for constant vigilance. Yes, I experience a reduction in intensity when stable that is similar to a temporary recovery — but I can only maintain this with my daily targeted therapy regimen.
Time to spend with family
Overall, I am glad that I have stable disease. Stable disease means that I have precious time to spend with my family and make memories. I can wait and hope for much-needed lung cancer research to take place and my next treatment to be developed. Although I am not cured, being stable makes it possible for me to treat my lung cancer as a chronic disease.
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.
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