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Intended for healthcare professionals

Practice What Your Patient is Thinking

Living with the fear of recurrence

ݮƵ 2024; 384 doi: (Published 31 January 2024) Cite this as: ݮƵ 2024;384:p2344
  1. Cordelia Galgut
  1. drcngalgut{at}yahoo.com

Cordelia Galgut talks about how important it is to validate ongoing fear of cancer recurrence and progression

I was diagnosed with early stage, bilateral breast cancer in 2004, on two separate occasions. My diagnoses were several months apart but both involved very tough treatments, including surgery and courses of radiotherapy. After all of this I assumed that the horror was over and that I would now recover. My prognosis was excellent, and my surgeries hadn’t been too radical, so I really believed this. I assumed, and was encouraged to understand, that I would “move on” quickly and put this awful time behind me.

I remember being told that I would probably fear the cancer coming back for a couple of years, probably around mammogram time, but that the fear would have mostly melted away by then.

The fear didn’t stop

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.

The terror was of more cancer being found and having to cope with the reality of that again. I didn’t know how I would cope with more treatments or living with that knowledge that I had more cancer in me. Death itself is less of a fear, though I don’t want to die. The real terror is the physical and emotional suffering I’d have to endure if I got more cancer.

Logically, my chances of recurrence are small, but it is that small chance that I focus on. I tried all sorts of strategies, including cognitive behavioural therapy, but I just couldn’t shift the terror. Nothing seemed to work. The problem is that the physical scars and long term effects persist. Whenever something changes or gets worse I always think, OK, here’s more cancer.

The relief of finding others

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.

The assumptions people make that life after cancer should be easy are just not true. It is great that many more people are surviving the disease, but quality of life living beyond cancer is not being adequately addressed. Being able to talk to others who have had a cancer diagnosis can be a lifesaver, but we need others to better understand the fears we live with. When someone tells me they accept what I am experiencing and feel for me, it really helps me find the strength and resolve to fight another day.This lack of judgment helps alleviate some of the pressure I put on myself to deny the reality of my life after cancer. Their supportive input helps me right the balance inside my head and enables me to believe that not everyone thinks I am exaggerating. What a relief!

What you need to know

  • A common fear of cancer recurrence is of having to go through treatment again

  • People living with and beyond cancer often avoid sharing their fears of recurrence because of others’ reactions

  • Telling someone you believe their fears, or initiating a supportive conversation, can offer them support

Education into practice

  • How could you initiate a supportive conversation about fear of cancer recurrence?

  • What could you do to support someone facing the fear of recurrence?

Footnotes

  • Competing interests: none.

  • Provenance and peer review: commissioned; not externally peer reviewed.