Welcome to My Rabbit Hole: A Cancer Survivor with Lymphedema Admits Fears


It’s important for cancer survivors to follow-up with things that worry them. For me, my lymphedema sparked some fear.

Illustration of a woman with light hair and glasses.

I think I am sensible, a little dreamy, but able keep my feet planted firmly on the ground. This week, though, I went down a rabbit hole known as fear of more cancer after breast cancer. This journey started with a concern about my right arm, which has lymphedema.

Even with well-managed lymphedema, there have been a few challenges, though nothing to cause great concern. I am cautious. I do what one needs to do to monitor this incurable side effect of cancer treatment and try not to worry too much.

Lymphedema has four stages from 0 to 3. Having lymphedema means being on the alert for threats to the status quo to prevent, if possible, further complications, which is what I have been working on for some years. My swelling will not go down, initial damage is done, but I hope not to move up the scale. Precautions are essential. Following up on anything that worries is always a good idea for cancer survivors.

When I felt a miniscule mass near my elbow recently, I decided to check it out. Between the time I made the phone call to set an appointment and the time I saw my primary care physician (PCP), I made the human error of reading too much on the internet about every possible scenario, especially the minute chance that I could have the rarest of some rare cancer associated with lymphedema. Or could I have some other kind of cancer? The kind that can be a side effect of my chemo, with this mass as the first signal?

Forget the fact that the logical explanation probably would relate to recent overuse of my arm involving lawn mower, hiking poles, knitting needles, exercise bike, etc. I wondered: would those activities combined affect my elbow? I did not know. Instead of waiting for my PCP to assure me that it simply appeared that a tendon was inflamed, I began rehearsing how I would react to bad news once a biopsy was made and I learned the worst.

Daydreaming, I decided I would be cheerful with this new diagnosis. “This is not my first rodeo,” I would joke with my oncologist. I decided that I would shave my head rather than going from bob to bald, the way I did the first time. Who would get my cats, if the prognosis was terminal? How would I tell my friends? You get the idea. I went so far down the rabbit hole I began telling myself that I have had a wonderful life, even with cancer, and that it will be OK to pass on.

What rattled around in my mind as I simultaneously tried to distract myself before the appointment sounds ridiculous, right? Wrong. A fear that may sound irrational is not irrational within cancer world. I have good company in my rabbit hole. Fortunately, to help me surface from the mental hole I dug, my PCP assuaged my fears and advised how to treat the inflammation.

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