Yesterday, a friend and fellow ovarian cancer survivor sent me a link to a 2024 article about Living with the fear of recurrence. Author Cordelia Galgut was diagnosed with breast cancer in 2004. She assumed that, after she got past the treatment and recovery phases, she would move on quickly. She was told that she would likely fear cancer recurrence for a few years, especially around mammogram time, but that the fear of recurrence would ultimately melt away.

But the fear didn't stop. She writes:

Imagine my shock when my life after cancer didn’t pan out like that. It was so different. The fear of cancer recurrence didn’t subside. At times I thought there was something seriously psychologically wrong with me. I started to feel miserable, and was indignant when others thought I was over-reacting. I was so confused. I was now several years out from diagnosis, but if anything, feeling more scared.

Her fear was less about death (though she acknowledges that she doesn't want to die) and more about how she would cope with more treatments. "The real terror," she says, "is the physical and emotional suffering I’d have to endure if I got more cancer."

Though she understands that her chance of recurrence is low, whenever something changes or gets worse, she thinks, "OK, here's more cancer."

That statement reminded me of a remark on the Instagram account of the now late Nicky Newman: "once you’ve been diagnosed it never leaves you, even after active treatment has finished every headache is a potential brain tumour, every ache is potentially bone cancer, every cough… lung cancer, the anxiety never leaves us, people don’t understand the mental health aspect of cancer unless they’ve experienced it first hand, and that’s fine, but we’re not being hypochondriacs, we’re not being drama queens and we keep a hell of a lot to ourselves because we don’t want to keep 'going on about it.'"

I've never forgotten that comment. From time to time, I feel like this person, thinking that every physical symptom is a sign of cancer's return. When I experience a new ache, I find myself wondering whether my cancer has returned. I keep these fears to myself because they're not helpful to me and I don't want to trigger worries on the part of my loved ones.

Galgut found solace in talking with other cancer survivors:

It wasn’t until I started talking to others who were living beyond or still with cancer, a few years after diagnosis, that I slowly started to realise I wasn’t as alone as I felt. Others also feared speaking out because of the lack of understanding. We shared our experience of judgment and just how hard this is on top of the fear of recurrence and progression. We felt fed up with the imperative to move on, get over it, not complain, and to be grateful we were alive. We felt the pressure from everyone to be positive, grateful, and not to upset others with negativity. This makes it hard to talk about how hard it is to live beyond cancer.

Fortunately, this has not been my experience—perhaps because I rarely speak openly about fears of recurrence or perhaps because I'm surrounded by compassionate people.

Still, there is merit in understanding that, for some of us who have faced cancer, the worry of recurrence never completely leaves. The friend who sent me the link to Galgut's article admitted: "Hits home for me too!"

As cancer survivors—even cancer thrivers—we smile; we laugh; we strive to live in the moment.

But, every so often, we worry.