Living in Fear of Cancer Recurrence

Fear of Cancer returning
Image © Shutterstock/fizkes

One of the most common problems that cancer survivors share is a fear that the disease will come back. Called “FCR”, a fear of cancer recurrence typically surfaces when treatment ends, with every headache, back pain or upset stomach causing people to worry that their cancer has returned. 

Researchers recently analysed data from over 9,000 patients across 13 countries and found that 59 per cent of survivors and patients with cancer reported a moderate fear of cancer returning, while a further 19 per cent reported their fear was severe. It’s an ongoing issue that can make day-to-day life a struggle, impact relationships, and make it difficult for a survivor to move on from their cancer experience. 

My experience of FCR began in late March 2015 after I’d had a lumpectomy and radiation therapy for early breast cancer. At first, it was a feeling of generalised uncertainty which came and went. On some days I felt so good I firmly believed that the devastating experience was done with, but there were other days when I found myself consumed with “what if?” thoughts. 

As 2015 progressed my fear grew stronger and became more persistent until it pervaded every waking hour. It didn’t help that I was also taking Tamoxifen, hormone therapy for breast cancer which lowers the risk of the early disease recurring or developing in the other breast. Tamoxifen comes with a long list of side effects that surfaced within a few weeks of starting it, primarily intense hot flashes which consumed me without warning at any time, but which were especially prolific at night while trying to sleep. 

By mid-year, the cumulative effects of sleeping poorly due to Tamoxifen and FCR were having a knock-on effect on day-to-day life including chronic daytime tiredness, trouble concentrating, and overall crankiness. By late August I had a nasty case of the “overs”’; overtired, overwrought, and overwhelmed. 

After a major meltdown, I accepted that I needed help and my oncologist referred me to a psychiatrist specialising in oncology and palliative care. Sitting in a comfy armchair across from the doctor two months later we discussed the trauma of a cancer diagnosis and treatment, and I realised that not dealing with FCR had cost me dearly in both time and emotional distress. 

Helping cancer survivors deal with FCR is largely an unmet need, however, a team led by UNSW Sydney researchers led by Dr Ben Smith is investigating ways to improve access to support through the online program, iConquerFear. It consists of five modules with participants completing exercises about goal setting, attention training and mindfulness, giving them a range of tools to help reduce unhelpful thoughts. 

This revolutionary program is accessible to all cancer survivors in Australia, and it’s a welcome development at a time when our health system is under strain addressing an array of mental health conditions. Dr Smith’s team has worked initially with breast and ovarian cancer survivors, but the end goal is a program that works for all cancer survivors regardless of the type of cancer they’ve survived. 

One of the key lessons I learned from my first breast cancer experience is that it made me feel completely disempowered. But taking control of your mental health and using strategies in day-to-day life to reduce your risk of cancer recurrence, such as eating a healthy diet, getting plenty of exercise, and getting enough sleep, do help. 

As it happens my breast cancer made a comeback in 2019, resulting in a bilateral mastectomy and chemotherapy. Yes, it was a worse scenario than the first time, but I hung on to those key lessons I learned from the initial experience and my mindset was completely different as a result.  

When I look back over the events of 2015, I refer to it as my Winter of Discontent after the iconic opening lines from Act I, Scene I, of the famous Shakespeare play Richard III. As for 2019, it was for my very own “annus horribilis”. Receiving a diagnosis of cancer is devastating, and surviving it is a triumph, but the key to successful recovery is managing your mental health in the aftermath. And that means not waiting until you have a meltdown to get help.  

Disclaimer: This article provides general information only, and does not constitute health or medical advice. If you have any concerns regarding your physical or mental health, seek immediate medical attention.

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