Still Living with Uncertainty

This past February 13th marked one year since having an upper right lobectomy that resulted in me reaching NED (No Evidence of Disease). Fortunately, I am still considered NED and hope that this status will last a long, long time.

Oncologist visits continue

Despite being NED, however, I continue to visit my oncologist every three months for CT scans of my lungs and neck and every six months for brain MRIs. I still take my daily targeted therapy medication because if I were to stop, it’s possible that the eight brain lesions and numerous bone metastases I had at diagnosis could return. Although nothing has shown up in my lungs since my surgery, it’s impossible to know whether or not I have micro-metastases that can not be seen that my oral therapy pills are holding in check.

The uncertainty and scanxiety persist

As a result, I am still living with uncertainty and scanxiety, just like I was prior to my surgery. Believe me, I am certainly not complaining about having no evidence of disease. I am thrilled that I was able to have the lobectomy and remain cautiously optimistic that it will have a significant impact on my long-term survival. However, I know others in the lung cancer community who have achieved NED status, yet have had their cancer recur, sometimes soon after, and other times once many years have passed.

My surgery hasn’t really changed the way I think of myself. I still view myself as a person living with stage IV lung cancer who currently has no evidence of disease. However, friends and family around me seem significantly more optimistic. In fact, my husband has even suggested that I should start thinking of myself as someone who HAD cancer as opposed to someone who HAS cancer. He says that now that I have had surgery and have no signs of cancer, he feels that he can relax for the first time since my diagnosis in 2013.

Continuously remaining hopeful and cautiously optimistic

I cannot allow myself to think that way. Why is that? Well, in addition to just knowing too much about how recurrence work as a result of my advocacy work, I simply feel that such optimism might now be completely outside of my comfort zone. There was nothing as earth-shattering and shocking as finding out that I had stage IV lung cancer in 2013. My diagnosis was completely unexpected and devastating. It took me a while to come to grips with the fact that I would be living with lung cancer for the rest of my life and learn to handle the accompanying constant uncertainty.

I feel that I have learned how to prepare myself mentally for recurrences over the past more than seven years. As a good friend and fellow lung cancer survivor told me when I was first diagnosed, “nothing will be worse than finding out your initial diagnosis.” I agree completely. I cannot allow myself to venture to the possibility that my NED status could actually be a potential “cure” — the thought of believing this and then having it proven wrong would be much too difficult to even imagine.

So, I remain hopeful and cautiously optimistic, which is the best that I can do. I continue to enjoy each day as much as possible and trust that I have the coping skills to handle whatever might come in the future.

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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.