Cancer

Scanitis: When Cancer Screenings Fill You with Dread

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I just scheduled my next round of mammogram and ultrasound screenings. My friends assume this is routine for me now—lord knows I have undergone enough tests to become an expert. But the truth is that a cancer screening will never be an ordinary matter. No matter how many scans I sit through, I will always approach them with dread.

I know I am not alone. Memorial Sloan Kettering social workers Penny Damaskos and Page Tolbert say that many survivors grapple with fear and anxiety around screening time.

“A week or two before the scheduled date, they would notice a change in their mood. Some felt anxious, some depressed, some irritable and short-tempered. Upon reflection, many realized what was going on: scanitis,” they write in their book, 100 Questions & Answers about Life after Cancer: A Survivor’s Guide.

Scanitis affects all survivors, but it hits young survivors especially hard. Most of us thought we were at the peak of our health before we got our first cancer test. Even if we had strange symptoms, we assumed they would turn out to be nothing. People in their twenties and thirties do not get serious illnesses.

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Or so we thought. When we sat in the doctor’s office and heard that our test results were positive for cancer, we learned to expect the worst. Our loved ones try to reassure us. “Don’t worry,” they say. “It’s just a test. I am sure it will be fine.” But we have lost that blind faith. We know things don’t always turn out fine.

Alex was in his early thirties when he and his wife were having trouble conceiving a child. They both got medical workups to see if they could increase the odds of getting pregnant, but instead of learning about fertility, Alex discovered he had testicular cancer. It didn’t end there. After his first surgery, doctors realized it had saturated his lymph system.

The disturbing results kept coming. “Every time I went into chemo, I would think I was feeling alright, but then there was some unpleasant surprise. It conditioned me going forward. I learned that there would always be a piece of bad news coming out of left field.”

I learned to anticipate the worst after my diagnosis. In the days before a test, I would tense up. I would stress over small matters and have trouble sleeping. Most of the time I didn’t recognize what was bothering me until I arrived at the cancer center.

I wish I could say the anxiety disappeared after I left the lab, but it didn’t. I would experience a brief surge of relief, but then I would return to thinking it was a hollow victory. I knew how inadequate scans were; my oncologist told me most women find their own recurrences before tests can detect them. My husband would try to cheer me up by saying, “This is great news; your tumor markers came back negative.” But that was no comfort in it. My friend found out her breast cancer had metastasized to her brain one week after her markers came back clean. She died two years later.

No breezy reassurances could brush away the hard realities of cancer. The fact that I might be one headache, one bone pain, one screening away from terminal illness was never far from my mind, but scan time drove it home. As one 28-year-old survivor told me, “I was always so pissed that a blood test would determine everything.”

Some survivors handle the distress of screenings by ditching them. I could never do that; I feel too much responsibility to my husband and children to refuse medical care. Instead, I have found ways of managing the fear.

I have learned not to schedule a test for right after a vacation, or I would spend the entire trip anticipating it. Nor do I schedule a test on a Thursday or Friday, because I would have to wait through the weekend to get results.

I have also learned to make room for the heaviness that follows every test. I don’t rush back to work, the playground, or anyplace where I have to pretend that getting a cancer screening is the equivalent of popping out to the bank. Instead, I clear my day. I walk around, go to a matinee, spend hours in a bookstore, and let myself think and feel whatever I want. I also indulge in a little retail therapy. My husband accepts that in addition to the insurance co-pay for every screening, we also have a fashion co-pay.

I know I am lucky: most of my tests have brought good news. But I still don’t know if I will ever be cured of scanitis. It may be a chronic condition that I learn to live with.