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Musings from a breast cancer survivor; how to deal with the fear of recurrence.

The fear of recurrence is something that everyone who has had primary breast cancer must face. No matter the type, stage, grade or your individual circumstances unfortunately there is never a 0% chance of it coming back. So until our tirelessly working scientists find the holy grail, a true cure, the fear of the cancer coming back is a very profound issue. 

Regardless of where we are in our journey, the fear of breast cancer recurrence is there. Although from my own experience I can attest to the fact that it does get easier as time goes on, I also know that it has a nasty habit of sticking. So while it won’t cripple you with fear every day for the rest of your life, it will pounce from out of the shadows once in a while and scare the life out of you. 

How to deal with the fear.

For some, the fear of breast cancer recurrence can be debilitating and affect their daily lives. Many breast cancer survivors suffer with some level of Post traumatic Stress Disorder (PTSD) after treatment. This is particularly so for people that went through chemotherapy, or had very advanced or aggressive tumours. It can be triggered by follow up scans (such as mammograms and MRI’s), blood tests, appointments with oncologists and aches and pains in your body. Even returning to a hospital where you were treated can awaken the beast in your mind. 

And so, it is important that we acknowledge it, take control and learn to live with it as best we can. I am now just over 2 years out from my breast cancer diagnosis. I had triple negative cancer, which has the highest recurrence rates and for which there are no targeted treatments available.  My tumour was large, and at the time of my diagnosis everything seemed very bleak. I was devastated by the thought that I would never again live without that all consuming fear. But as time has gone on I have learned to identify my triggers and apply coping mechanisms when it becomes too much.

As with so many things during a fight with cancer, dealing with the fear of recurrence has been a huge learning curve. I’ve learned the hard way how to prevent it from overwhelming me. Now I want to share these insights with those of you who are perhaps at the start of your journey, or are struggling to cope with the spectre of recurrence.

Accept that the fear is normal.

One of the biggest “lightbulb over the head” moments for me was when I finally accepted that fearing recurrence is completely and utterly normal. I have never yet met anyone who has had primary breast cancer who has not felt it. These people are the unicorns of the breast cancer world, I’m not even sure they exist! 

You are not failing, crazy, dwelling or coping badly. The fear you feel is very real and for good reason. You’ve been to a place no one wants to go, you’ve fought for your life and dealt with crippling blows along the way. Of course you can’t just forget about it afterwards, you’re traumatized. How you are feeling is normal.

Photo by Drop the Label Movement on Unsplash

Ignore the statistics.

It’s so important to remember that none of the scary statistics that you read online apply to you directly. You could have a 90% chance of recurrence according to Dr. Google, but still be in the 10% that doesn’t have one. 

If you are someone that likes to have numbers, ask your own oncologist directly. They are in a better position to answer your question with more accuracy as they know your unique set of circumstances. Even then keep in mind that they are not fortune tellers, and are just delivering an educated guess. 

Take breaks from any triggering groups you are a part of.

One of the best things I have gained from having breast cancer is a powerful connection to an amazing group of women. The breast cancer sisterhood is a beautiful and warm tribe. It’s an exclusive group. The bonds you make are built on a shared experience that only those in it can truly understand. 

Photo by Vonecia Carswell on Unsplash

Unfortunately, along with these friendships comes an inevitable amount of loss. After all, this is cancer we are dealing with. There will be people who have terrible experiences through treatment, people who have recurrences and people who die. It is an intense and painful truth that can be immensely triggering. 

So, when I start to feel that dark cloud of fear descending, I duck out of these groups until I am feeling stronger again. I have become conscious of the fact that when I start obsessively checking my breasts and neck for lumps, or poking at my ribs looking for tender spots, it’s time for a break. 

There is no need to feel guilty for doing this. You will go back to them when/if you can and be in a better place mentally to contribute to the group. 

Remind yourself that only your situation is your truth. No one’s story is yours but your own. 

Avoid general stress and anxiety.

This is something that tends to come hand in hand with survivorship anyway. The knowledge that life is too short to sweat the small stuff. But we are still only human, and as life goes on we are faced with all of the usual stresses to negotiate that everyone else is. It would be unrealistic to expect otherwise. 

Still it is wise to avoid stress whenever you can, and learn the coping mechanisms that work for you. Activating that part of your brain can land you straight back into the depths of fear of recurrence. You started off anxious about a job interview, but are suddenly anxious about your cancer coming back too. Because that is where the fear lives, in the anxious part of your brain. 

So, when you start to feel stressed about something, pause, take a step back from the situation and figure out what you can do to reduce it. Ask yourself if it is really worth stressing over at all. It’s all about self awareness, applying the brakes and changing your mindset. 

For me a walk in nature, sitting down to write and playing with my little girl are what ground me. With these things in my arsenal I can usually come back to a situation with a clear head and deal with it pragmatically before it has escalated in my mind. 

Photo by Andraz Lazic on Unsplash

Plan for the future.

This can be so hard to do, especially at first. It is tempting to expect your cancer is going to come back so that if it does it won’t be as devastating. For a long time I lived for the moment and refused to look too far ahead.

But, will anticipating it’s return really make it any less awful if it does? I don’t think so. All that living in that head space does is rob you of truly enjoying your life. It stops you hoping for all of the things that you did before.

So have the courage to buy the house, apply for the job, change your career, book the holiday, have the baby. Start focusing on and making plans for your happy future again. It will naturally lead to removing your focus off of the cancer and on to something positive.

Don’t internalize the fear.

It is common to keep your anxieties to yourself. To want to protect your loved ones from your feelings and not burden or worry them. It can even feel uncomfortable to bring it up after a while, but those who were with you on your journey will completely understand. Anyone who doesn’t is probably not worth your time, as harsh as that might sound. 

Internalizing those feelings can lead to them growing out of all proportion. It is a lot to be carrying on your shoulders alone. Talk to your family and friends. Let them share the load and bring some perspective to the situation.

Photo by Noah Buscher on Unsplash

If you can’t reach out to loved ones for any reason, ask your oncologist or breast cancer nurse for a referral to a therapist. A good medical team will value your mental health as much as your physical health, especially when fighting cancer. They will have access to psychotherapists who specialize in dealing with the nuances of cancer and survivorship.

May your choices reflect your hopes, not your fears

Nelson Mandela.

If you enjoyed this article you may also be interested in these from my “musings from a breast cancer survivor” series;

For more breast cancer information and support go to “Breast Cancer Now“.

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