Scanxiety and Me

Is there anyone who has ever received a cancer diagnosis that doesn't at one time or another have a fear of recurrence? I'm not much of a worrier, but I know that I have had the occasion when I was just sure I could feel a new knot on my collarbone, the place where my cancer was first discovered.

Ever present...scanxiety

Who among us doesn't breathe a sigh of relief after we either read the radiologist's report or hear our oncologist tell us that our latest scans showed no change from the previous scan? I can't imagine that there's anyone who doesn't quit holding their breath at least a little at that news.

But, there's a difference in having a little niggling of concern and a full-out panic attack. I know people who go into complete panic mode for several days before they have a routine CT scan and stay in that mode until they finally hear the doctor say, "You're still NED." I mean, they are so paralyzed by fear that they refuse to even leave the house for about a week, except to go for the scan.

Where does the panic come from?

I don't suffer much from scanxiety myself. In fact, I am always a little anxious to have a new scan. I don't know if it is because I had them every six weeks for four years or what. When I had them so frequently, I grew accustomed to knowing whether the drugs were still controlling my cancer or not, almost in real-time.

Now, I have scans every four months and by the end of month three, I'm ready to go get another scan. Unlike some people I know, I look forward to the scan because it is going to tell my doctor and me whether I can breathe easy for another three or four months because I'm still stable ... or whether we need to come up with another plan of attack. Either way, I want to know where I stand.

My experience with scans

Maybe I don't go into panic mode because only twice during my six years with cancer have I been told that I have significant tumor growth. The first time was after I finished my rounds of traditional chemo and my oncologist gave me a slight break from treatment to let my body recuperate. That time, all of the progress we'd made from the chemo treatments was lost.

I was left with a decision to make. I could try another chemo or go into a clinical trial. I wasted no time at all getting into a clinical trial. And, that was the best decision I have made during this cancer journey.

My trial happened to be for a drug that is common these days - Opdivo (nivolumab). I am one of those people who respond well to immunotherapy with few side effects. For four years, my cancer remained stable.

Then, one tumor began to grow again (ironically, the one on my collarbone). I made my second best decision since my diagnosis and decided to have it radiated. That obliterated the tumor and I started back onto Opdivo.

Making informed decisions

So for me, scans have led to my being forced to make decisions on occasion. And, the decisions that I've made are some that I consider my best.

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