Why do we need to talk about ‘screening’ after cancer?

“When you’re diagnosed, you focus on being cancer free,” says Nick, 35. “And I’m happy to say that I am, but you don’t understand that the challenges continue in a different way.”

Nick was diagnosed with bowel cancer in February last year. Now they have scans every six months after successful chemotherapy and surgery. “They control your life because, for example, I want to go on vacation. But should I wait until I do my next scan? Or still booking a vacation? The bad news is, will I want to go on vacation?”

I understand this “crawling anxiety”. My breast cancer treatment ended earlier this year. I expected a cheerful “totally clean,” but instead a doctor told me that I should be on the lookout for signs of relapse, even though there is currently no evidence of cancer.

“We used to talk about being ‘in remission’ or ‘clean,'” says Jane Laing, a specialist nurse at Macmillan Cancer Support. “But now the language has changed back then to ‘no evidence of disease’.”

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

The end of treatment is often the hardest part, he adds. “People seem to get over it because they put on a brave face, but internally they struggle,” she says. “They want someone to say their cancer won’t come back, but nobody can.”

Unlike Nick, I don’t have regular screenings because with breast cancer they only screen for signs of recurrence. “The problem is that the cancer doesn’t show up on the scan until it’s a certain size,” explains Jane. “There is research showing that regular screenings are no better at detecting recurrence than looking at symptoms.”

But the symptoms are varied and vague. If my cancer does come back, it won’t be in the other breast because that would mean a completely new cancer. The remaining cancer cells are much more likely to form a tumor elsewhere in my body, such as the lungs, liver, lymph nodes, bones, or brain. Signs include everything from headaches and back or neck pain to coughing or fatigue. And many people don’t know what to watch out for because their advisors believe the information only worries them.

It must be difficult for doctors to walk the line between making patients understand their risks and not filling them with fear, especially since anxiety can actually cause symptoms to appear. I recently had a scan for back pain. Fortunately, it turned out that my tense, knotted muscles just needed a massage. But I lay in the scanner crying, thinking about how my kids would cope if I died.

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