If there is one thing I have seen consistently in caring for patients with cancer, it’s the anxiety that comes with scans. It’s called scanxiety. Even when the cancer is gone, patients must undergo periodic scans to make sure it hasn’t returned. These are the scans that can bring patients to their knees, for so much (EVERYTHING) rides on the results. Nobody captures the whole of the process better than a beloved friend and patient in her piece below.
Cancer is a betrayal. It works silently, internally and often doesn’t even make you symptomatic until it has been sneaking around your body for months or even years. Learning that I had Stage IV Bile Duct cancer was both a shock and a sucker punch. How could there be so much going on in my body without my knowing? How would I ever trust my body again? I decided from the minute of my diagnosis that I wasn’t going to “fight” cancer. It wasn’t going to be me against my body. Yes, I felt betrayed--but I figured my body must have been under some serious distress to have to sent out such bold warning signals.
Since cancer can’t be seen with the naked eye, most of us cancer people have to rely on scans to inform us about how our cancer is behaving. For me, that scan is a CT every 3 months. The first CT scan I ever had was done 3 days after I learned I had cancer. I remember it so vividly because it was one of the most terrifying days of my life. The scan would tell some truth: Were the images the ultrasound had picked up, in fact, cancerous tumors? Or something else? In retrospect, I’m sure there wasn’t much doubt that what we initially saw on that ultrasound was indeed cancer but I had spent the entire weekend scouring the internet for what else it could possibly be. I desperately needed to know it could be something benign, something less than lethal.
On Monday morning I found myself lying on that hard cold table shaking violently. My body convulsed in measured ripples, my teeth audibly chattering despite the warm blanket draped over me. The technician was kind, speaking softly and assuring me the scan would be quick and easy. I wasn’t scared of the scan itself, I was terrified of the results it would churn out.
It has been three years and three months since that first CT scan, and I confess to living life in fear of each and every scan. They’ve coined a word for this--scanxiety--and it’s a well-known phenomenon in the cancer community. For me there is a predictable pattern that follows one scan and leads up to the next. In Part 1, I usually have a physical pain or sensation that I focus on prior to a scan, that ramps up in the four weeks prior to the scan date. My cancer having been in my liver, I typically experience pain in my abdominal region or my back--although as I type this, I have a pain in my chest which, in my mind, corresponds to my lungs which is an area my cancer is known to travel to. No matter how much meditation or positive self-talk I do, there’s an insistent little voice repeating its own negative mantra: “This is cancer.” You see, my body betrayed me before, how do I know it won’t do so again? I love my body; we’re friends. I have felt great compassion for it, especially since having cancer. I am pro-body. Really. I am. Yet in the weeks leading up to a scan, all bets are off. That little voice starts to get louder and more direct: “CANCER.” I find myself less engaged in my environment, less accessible to those around me and more distracted. My sleep suffers, my appetite wanes or sometimes goes into overdrive, I feel unhinged and scared.
I also feel frustrated that I am in a well known pattern yet feel powerless to change the sequence. At times I feel downright sad. My husband will hug me and look me in the eye and say, “Come baaaaaack,” his expression telling me he understands my fear but hopes I can unlatch from it and return to him. He reminds me this is a pattern. Every time I have had a pain or a twinge or a sensation, the scan has proved it wasn’t cancer. Except the time a year and a half ago when I had a pain very similar to the pain I had when I was first diagnosed and bingo, that scan showed a new small tumor in my liver which turned out to be a reoccurrence (I loathe that word). See, proof, I got duped. For me it’s like what I learned in psychology in college from B.F. Skinner and operant conditioning. Learning is modified by consequences. Intermittent reinforcement makes the extinction or elimination of behavior more difficult. I feel like my scan experience has only strengthened the worry, pain cycle I have developed. Most of the time I’ve had a clean scan, but because there have been two times now that a scan has confirmed cancer in my body, I am reinforced in my belief that I must assume the worst, that my hyper-vigilance is necessary.
Part 2 of my scanxiety is waiting in my doctor’s office to get my scan results, which is agony. When I get the results and it’s a clean scan, I often crumple to the floor and cry after my doctor exits the room. The relief is whole-body physical. My husband, who is also in the room, gets immediately exhausted because he has spent so much energy prior to the scan keeping me afloat. I fly high that happy clean-scan day and feel a sense of calm and well-being for three weeks or so. And then. And then off I go, again, gradually letting fear creep back in. The whole thing repeats.
I foolishly thought that if I had clean scans for a while this pattern would lessen. I have found the opposite to be true. The longer I go with no detectable cancer, the more sure I am that the next scan will be the one that sends me back to that awful place where we all have been. The place I was told I had cancer. I would like to trust that I am well; that I may never have cancer again. I would like to believe my body won’t betray me. I would very much like to stop needing scans. I am not there, though, and you may not be there either.
Despite my fear and worry, I do have joy and a life outside of cancer. I will admit that at the writing of this article I am not at my best place. Living with PTSD and scanxiety is like any other challenge: There are times we are riding on top of the wave with a clear and bright outlook and times when we are sucked under the wave, tossed around, fighting for breath and shrouded in darkness. I think it’s important to be in your truth, whatever that is, and be kind to yourself. Let others know when you’re sad or scared and when you feel good, dance to a great song in your living room, prune your roses, do something kind for someone else. Those are the things I do. Know that there are so many others that live day to day with the same challenges you face. Each day brings promise that it will be a dance in your living room kind of day.
Scanxiety, My Response
In May 2015 my beloved friend and patient posted this blog. http://hilary-love.com/2015/05/ It’s a soul-rending look at what it feels like to be headed into scheduled scans and wondering if the results will “blow the pants off your life once again.” This is was my response to her and is my response to scanxiety:
I just read your blog. I know you are headed to Baylor today and will see Dr. Curley tomorrow.
I need to get you my Tibetan chants, and will (sorry for the delay!). But they are the perfect contrast and alternative to your oxygen deprived mountain top on which you feel like you are teetering.
After I graduated from PA school, my adorable, adventure-loving husband dragged me to India and Nepal. I say “dragged” because being the type-A driven woman that I can be, I was dying to just jump into my job and get started. He convinced me to take a break, take advantage of the time and do something meaningful with him. Thank god I am married to this man. It was an amazing and crazy adventure with most of our time spent in India. But, we went to Nepal to hike. We hiked out of this charming town and went up into the mountains. We hiked up to this small “tea house.” Tea houses are the inns or guest houses that you stay in when hiking in this area of Nepal. They are someone’s home. They provide a bed on which you lay your sleeping bag, shelter, meals--and in the case I’m about to tell you about, so much more.
Our tea house was run by three sisters, all slightly crazy (in a VERY good way), strong and wise. These women ran the show. They milked the yaks, churned their milk into butter, built fires, cooked for travelers like us, weathered the weather and played Tibetan chants. There were morning chants to wake you in the morning; there were chants that played at happy hour, and chants that played at bedtime. The chants sang out on loudspeakers and echoed across the hillside and over the whole house. The happy hour chants were particularly amazing. With the sun setting and a little vodka, the repetitive spiritual rhythm was hypnotic. Daniel and I would take to this particular hill that looked out onto the mountain range and would sit with our eyes closed and feel the chants encompass us. It was replenishing and empowering and the whole world literally lay before us and around us.
We sat on this mountain top and soaked up all its power. We soaked up the sun’s rays that are so much stronger when you’re up high. We breathed in the scant but cold fresh air that, despite its low oxygen content, filled us with life.
This is the mountain you need to put yourself on today, and every day. The oxygen might be low and you might feel as if you are teetering, but you’re not. Envision the sun poking you with prongs of strength, the cold wind hitting your skin and biting you with life. Envision the wind propelling you upwards and the chants holding you up to move through the voice of anxiety.
Today, repeat a mantra and as you do close your eyes and put yourself on this mountain.
Draw strength and power from all that you have within you and the path that you are forging. This is your mountain and no one can draw on its resources as you can. Own the mountain!