When Is Cancer Gone?

When is cancer gone? This is a question we discussed at my new breast cancer support group. Is it when you are through with your treatments? When the tests can’t detect it? Is it when you have survived a fixed number of years or follow up exams without any evidence of disease? There is a word for that. NED is the word. No Evidence of Disease.

For some, the answer is never. Once you have had cancer or The Cancer as many call it, you always know in your bones that it is just lurking in there somewhere waiting to emerge when you relax enough to almost believe you are truly cancer free. For others, the first chance they get they put cancer in the past tense and keep it there. “Something that happened to me once, long ago…”

When we first moved to Oregon, three years after my treatment for uterine cancer ended, I still needed that annual confirmation that a CT scan gave me. Still NED. A physical exam, PAP smear and CA-125 added to the confirmation. Still NED. My anxiety levels always soared just before my annual checkup. With the NED confirmation, I could relax for another ten or eleven months before I started worrying again. As the years passed, cancer did become less and less of a presence in my daily life. I allowed myself to think that I was done with cancer. Unfortunately, cancer wasn’t done with me.

I think it is different for each of us but in the end, cancer is only truly gone when you decide it’s gone. As long as it controls your daily decisions about what you can and can’t do or can or can’t plan for, it is in charge. As long as you allow it to dominate your life, it will. Of course, there is no choice when you are in treatment. Appointments and the realities of treatment will rule each day. But once you are done with treatment and there is no longer a schedule, a plan, an activity that serves in the battle—what then? It leaves a hole in your life that is too often filled with obsessive thoughts of cancer. What should you be doing? What should you be eating? Is your spiritual house in order? Every single one of these worries comes back around to cancer. We need to find something better to fill the void when treatment ends. I’ll have some time to think about just what that will be.

When I’m done with treatment, I want to be done with cancer. I want to banish it and believe it so firmly that it is no longer the dominant theme of my daily life. I wonder if that’s possible. Maybe cancer will always be part of my daily thinking and planning but I’m hoping it will play a minor role and not be the star of my story.

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