How to cope with ‘scanxiety’ after cancer

Nick Summerfield - Rii Schroer
Nick Summerfield - Rii Schroer

“When you get diagnosed, your focus is on being cancer-free,” says Nick, 35. “And I'm happy to say that I am, but you don't realise the challenges continue, in a different way.”

Nick was diagnosed with bowel cancer in February last year. Now, following successful chemotherapy and surgery, he has scans every six months. “They control your life because, for instance, I want to go on holiday. But should I wait until I’ve had my next scan? Or book a holiday anyway? If it’s bad news, am I going to want to go on holiday?”

I understand this “scanxiety”. My treatment for breast cancer finished earlier this year. I expected a joyful “all-clear”, but instead had a doctor tell me that, although there’s currently no evidence of cancer, I must be vigilant for signs of recurrence.

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

One surgeon said my risk of recurrence was around 40 per cent, which came as a shock as I (perhaps naively) thought I’d be in the clear after all the treatment and surgery I’d been through. But, Laing explains, every case is different. “There’s a risk of recurrence with all cancers, and with some the risk is higher. But nobody 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, she adds. “People look like they’re coping because they put on a brave face but, internally, they're struggling,” 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 if you have signs of recurrence. “The trouble is that cancer is not visible on a scan until it’s a particular size anyway,” explains Jane. “There is research to show that regular scans are no better at spotting recurrence than looking out for symptoms.”

But the symptoms are varied and nebulous. If my cancer returns, it won’t be in the other breast, as that would involve a completely new cancer. It’s far more likely that any remaining cancer cells will form a tumour elsewhere in my body, like the lungs, liver, lymph nodes, bones or brain. Signs include everything from headaches and back or neck pain, to a cough, or fatigue. And many people don’t know what to look out for because their consultants believe that information only makes them anxious.

It must be hard for doctors, walking the line between ensuring patients understand their risk, and not filling them with fear, particularly since anxiety can actually cause symptoms to manifest. I recently had a scan because of back pain. Luckily, it transpired my tense, knotted muscles just needed a massage. But I lay in the scanner tearfully thinking about how my kids would cope if I died.

Raveen, 27, was diagnosed with Hodgkin’s Lymphoma in 2018. She describes finishing cancer treatment as “a relief”. But, after a cough turned out to be a symptom of further cancer less than a year later (which, luckily, was treatable), relief was replaced by fear. “The anxiety was worse because you’re so aware that it can happen again,” she says. “It’s scary. Coughs and headaches are normal for everyone but, when you’ve had cancer, you always think: is this something more serious?”

Psychotherapy has helped, she says. “It's not easy to speak to your family about fear around death, because you don’t want to worry them,” she explains. “Therapy provided me with an outlet for my feelings.”

Talking is vital, because so many people feel alone with their fear. “It can be isolating,” says Sian Robinson, one of Macmillan’s service knowledge specialists. “And other people’s expectations are hard. We hear from people who say their employer thinks they should be back to normal now, and friends and family don’t want to talk about anything negative. But it’s toxic positivity because they have no one to talk to about their fears.”

Nick found that getting back to things he enjoyed pre-cancer has helped. “Before I got ill, I was fit and healthy,” he says. But cancer treatment meant extreme fatigue and a stoma bag, so he couldn’t exercise. “I was trying to be positive, but I felt like I was in cancer prison. Without realising it, I built up anxieties – and anger – around ‘why me?’” Long walks with his dog kept him sane. “And I'm now allowed to exercise again, which has made a world of difference. I can let all the stress out, and I’m sleeping better at last.”

“I can never go back to normal,” he adds. “But I’m finding out what my new normal is.”

Macmillan Cancer Support is one of four charities supported by this year's Telegraph Christmas Charity Appeal. The others are Age UK, Action for Children and RBLI. To make a donation, please visit telegraph.co.uk/2022appeal or call 0151 284 1927

Reconstruction: How to rebuild your body, mind and life after a breast cancer diagnosis by Rosamund Dean is available to preorder now