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Fear of my cancer coming back wakes me up at 4am

Rosamund Dean
After writer Rosamund Dean had been through treatment for breast cancer, she was surprised to find out that there is no such thing as being given "the all clear" from doctors - Clara Molden

When Sarah, Duchess of York recently said that, since having breast cancer, she now suffers from “four in the morning syndrome”, I knew exactly what she meant. “You suddenly wake up feeling sure you’ve got cancer somewhere else,” she said, describing an experience all too familiar for those of us who have been through treatment.

Before my own breast cancer diagnosis, I had complete faith in my good health. I felt sure that the lump in my right breast was nothing. On being told it was cancer, I felt as though I’d been betrayed by my own body, and it shattered my confidence. Sarah Ferguson’s tumour was picked up on a routine mammogram, with no symptoms. No wonder she wakes up wondering what else might be going on inside her body.

Fear of recurrence is a huge cause of anxiety for people after being treated for primary breast cancer. It doesn’t help that treatment doesn’t seem to have a decisive ending. After I’d been through chemotherapy, radiotherapy and surgery, I asked my oncologist when I would get “the all-clear”. She actually laughed. Apparently, that’s something they only say on TV.

In real life, the best you can hope for is “no evidence of disease” after a scan, which doesn’t mean it won’t be back. And, if it does come back, it’ll be elsewhere in the body – the most likely places being the liver, lungs, bones or brain. This is known as secondary breast cancer and, once this happens, there are treatments to manage it but it can no longer be cured.

Shortly after the end of my chemo, I had a follow-up appointment with a surgeon who explained that due to the type, grade and stage of my cancer, I was at high risk of recurrence. She advised me to be “extremely vigilant”, as there is every possibility that there are rogue cancer cells rooting around in my body, looking for a new place to make a tumour. You can imagine why it’s easy to become obsessed with every headache or chest pain and work yourself into a frenzy at 4am. Believe me, I understand exactly how debilitating that anxiety can be.

rosamund dean
Dean: "You have to find ways to manually override your brain’s natural, and understandable, fear" - Clara Molden

But “high risk” is relative – there is still a good chance that my cancer will not come back. After all, the stats show that the outlook is good: 76 per cent of people diagnosed with breast cancer will live for 10 years or more. Is there a way to focus on this positive outcome, while also being vigilant for signs of recurrence?

The first thing is to understand why the 4am panic is happening. The brain is not designed to make you happy; it’s designed to keep you safe. That’s why it grabs the worst-case scenario, spiralling into thoughts that any ache or pain could be a recurrence. This increases stress and leads to hyper-vigilance towards sensations in the body, which can be a vicious circle: anxiety causes a tension headache, sparking more anxiety.

You have to find ways to manually override your brain’s natural, and understandable, fear. And not by trying to ignore it, which will only make it burst back out when you least expect it. Learn to acknowledge it, but not dwell on it. I’ve found it helpful to think of a two-pronged approach. First, by dealing with the fear itself. Secondly, by doing everything I can to reduce the risk of recurrence.

Exercise ticks both of these boxes because, not only has it been shown to reduce the risk of breast cancer recurrence by between up to 60 per cent, it also dissipates the stress hormones adrenaline and cortisol, while stimulating the production of endorphins, which can improve your mood. I am not a natural exerciser, but I have tried various things in an attempt to make it a habit. What has worked best is keeping it simple. Yoga With Adriene videos on YouTube are free and convenient, and getting outside for a walk or a run is helpful for your body and mind in the dark winter months. Mindfulness and meditation can help by bringing your awareness to the present moment, calming racing thoughts. Apps like Headspace and Calm are great for this.

And remember you don’t have to cope with it on your own; there is support out there. Maggie’s Centres run a six-week course called Where Now? for people coming out the other side of cancer treatment. It covers movement, nutrition and emotional wellbeing, as well as post-treatment challenges such as the fear of recurrence.

Breast Cancer Now runs a similar online course called Moving Forward. And Life After Cancer is an excellent organisation, running a mix of online and in-person support groups and courses. The honest and uplifting podcast hosted by broadcaster Victoria Derbyshire, And Then Came Breast Cancer, produced by the Future Dreams charity, is also excellent.

If you’re struggling, I hope it is reassuring to hear that it does get better. My treatment ended 16 months ago, and I feel much calmer now than last year. Eventually you’ll find a balance between being vigilant about the risk and forgetting about it enough to enjoy life. The process is not smooth. You will have good days and bad days. Days where you can’t stop crying, or are paralysed with anxiety, and days when you barely think about it.

As one friend with breast cancer said to me: “The only way you really know that your cancer hasn’t returned is when you die of something else.” That might sound bleak, but I found it freeing. None of us knows what the future holds. So try not to waste too much time worrying about it.

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