Why we need to talk about scanxiety after cancer

“When you’re diagnosed, your focus is on being cancer-free,” says Nick, 35. “And I’m happy to say I am, but you don’t realize that the challenges continue in other ways.”

Nick was diagnosed with colon cancer in February last year. Now, after successful chemotherapy and surgery, he is checked every six months. “They control your life because, for example, I want to go on vacation. But should I wait until I have my next scan? Or book a holiday anyway? If it’s bad news, will I want to go on vacation?”

I understand this “fearlessness”. My treatment for breast cancer ended earlier this year. I expected a happy all-clear, but instead had a doctor tell me that while there is currently no evidence of cancer, I need to watch for signs of a recurrence.

“We used to talk about being ‘in remission’ or ‘clear,'” says Jane Laing, a registered nurse at Macmillan Cancer Support. “But now the language has changed from ‘no signs of illness’ back then.”

One surgeon said my risk of recurrence was around 40 percent, which came as a shock as I thought (perhaps naively) that I would be fine after all the treatments and surgeries I had gone through. But every case is different, explains Laing. “All cancers have a risk of recurrence, and some are at higher risk. But no one can be sure what will happen to that particular patient, so they can’t give an absolute risk figure.”

Ending treatment is often the hardest part, she adds. “People look like they can handle it because they put on a brave face, but inside they’re fighting,” she says. “They want someone to say their cancer won’t come back, but nobody can.”

Unlike Nick, I don’t have regular scans because with breast cancer they only scan when you have signs of a recurrence. “The problem is that cancer is only visible on a scan if it is of a certain size,” explains Jane. “There is research showing that regular scans are no better at detecting recurrences than looking for symptoms.”

But the symptoms are varied and nebulous. If my cancer comes back it will not be in the other breast as it would be an entirely new cancer. Any remaining cancer cells are much more likely to form a tumor elsewhere in my body, such as in the lungs, liver, lymph nodes, bones, or brain. Signs include everything from a headache and back or neck pain to a cough or tiredness. And many people don’t know what to look for because their advisors think information only makes them feel insecure.

It must be difficult for physicians to walk the fine line between ensuring patients understand their risk and not instilling fear in them, especially since fear can actually cause symptoms to manifest. I recently had an exam for back pain. Luckily, it turned out that my tight, knotted muscles just needed a massage. But I lay in tears in the scanner and thought about how my children would deal with it if I died.

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