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Onco-Anxiety: Wondering If Each Twinge Or Pang Means Cancer Is Back

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(Wistechcollege/Flickr)

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Take a moment to notice the weight of your feet on the floor. You probably hadn’t been thinking about that little sensation of pressure, but now that you’ve paid attention to it, you may find it’s actually a bit hard to un-notice it. As a psychiatrist, I often use this kind of exercise with patients to demonstrate the concept of mindfulness.

Now, for a minute or so, try specifically not to notice it. Think about anything else, but whatever you do, do not think of the weight of your feet on the floor.

Now imagine I told you that every time you do notice it, it means you may soon die. Not today or tomorrow, but maybe later this year or next, or really who knows when, but soon.

That’s what it feels like to live with cancer. Every little sensation you have in your body could be the one that signifies disease recurrence or metastasis, and the more you tell yourself not to pay attention because you know it is out of your control, the more you find yourself obsessing over every little twinge, or pang, or odd sensation.

In January, I was diagnosed with an aggressive form of cancer in my left kidney. Within a week, the cancerous organ was removed surgically, but I was told that with my particular set of circumstances, the odds were high that it could recur in the first year or two. And since the original tumor site was removed, it’s really anyone’s guess where the cancer could come back.

Most often, recurrences arise in the lungs, where an imaging study of my chest happened to pick up a few tiny nodules that will need to be anxiously monitored. Recurrences also occur in the local tissue around the removed kidney, in the bones, the adrenal glands, the liver, the brain, or even the other kidney. It could be literally anywhere.

In me, this wide-ranging uncertainty about where the cancer could hit next translates into self-sensitivity that is off the charts. The normal bodily sensations associated with the wear and tear of being alive are transformed in my mind into imminent death.

• One recent day I noticed that my heart was beating faster than usual and immediately knew the cancer was back in my adrenal gland.

• The next day I had a single bout of word-finding-difficulty and knew that a metastasis in my brain was impairing my thinking.

• Then I had several days of vague achiness at what I am now calling the Nexus of Onco-Anxiety -- the area around my rib cage on the right side that is directly over my liver. It is near enough to the lower parts of my lungs that the discomfort was definitely a manifestation of cancer recurrence in the bones, liver and lungs all at the same time.

Each of these transient experiences faded back to normalcy quickly enough that they were probably variants of everyday human existence rather than ominous harbingers of my death.

The discomfort at the Nexus of Onco-Anxiety did last long enough for me to ask my doctor about it. It was definitely not my liver, he said, because the pain would be much, much worse -- so perhaps I have that to dread, too.

Adam Stern at his home in Newton (Jesse Costa/WBUR)
Adam Stern at his home in Newton (Jesse Costa/WBUR)

As clichéd as it would have previously seemed to me, I’ve meaningfully connected with lots of wonderful strangers on the internet who share my disease, and in many cases have been dealing with it for much longer than I have. When I expressed that I’ve been struggling with this anxiety around symptoms, there was a lot of empathic reassurance from these kind folks, but also the acknowledgement that to some degree, the anxiety never goes away.

One woman helpfully shared that when she feels something happening in her body, she reframes it as a sign that her immune system is killing off the cancer cells that were left behind after surgery.

Yesterday, I noticed the oddest sensation in the back of my throat as I exhaled. It was warm and involved a kind of burning aroma featuring a pungent blend of … something foreign to me.

My mind immediately knew that I was developing pneumonitis from the immuno-oncology infusions I’ve started. My lungs were becoming inflamed to the point of scarring and that’s what I was noticing in the air I exhaled. Or maybe the medicine had attacked my pancreas, sending me into potentially lethal diabetic ketoacidosis, which was producing the unusual breath.

As I was searching my mind for ways to test these hypotheses, another thought occurred to me thanks to my online peer. Maybe the medication was doing its job, stimulating my immune system to hunt down remaining cancer cells. Maybe I was noticing the smell when cancer dies.

Today, the sensation is gone, and my mind is back to patrolling my body for unusual activity.

I wish it weren’t the case, of course. I am back at work, helping patients of my own, enjoying the time I spend with my family, and writing. But all the while, my mind is on persistent patrol in the background.

I hope that some day, many years from now, I’ll look back at these anxiety-filled days as an unnecessary and unhelpful distraction. I try to imagine a time when I am not only living with no evidence of disease, but also free of the fear that living with cancer brings.

Adam Stern, MD, is a staff psychiatrist and director of psychiatric applications in the Berenson-Allen Center for Noninvasive Brain Stimulation at Beth Israel Deaconess Medical Center. He is an instructor in psychiatry at Harvard Medical School.

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