Sometimes, only a survivor can properly explain the fear of recurrence in breast cancer survivors. Since October is Breast Cancer Awareness Month, we thought we’d share some insight into the fear of recurrence in breast cancer survivors.
Breast cancer is often a complicated diagnosis to deal with. Fear of recurrence means even when your tests come back clear, and you seem to be cancer-free, you may not be able to go back to enjoying your life as normal.
Sometimes, the fear of recurrence in breast cancer survivors never really goes away.
The unfortunate truth is recurrent breast cancer is a real possibility for many survivors, with approximately 7 – 11% of cancer survivors experiencing a recurrence within five years.
However, while the risk of your cancer coming back might be low, your chances of feeling stress, anxiety, and fear about recurrence are much higher. Kathleen Ashton, PhD suggests up to 50% of survivors experience “clinically significant” symptoms of fear and anxiety about cancer recurrence.
Brynn Barale, a 14-year breast cancer survivor, holistic health coach and registered nurse describes the fear of recurrence in breast cancer survivors from a very personal standpoint. She explains,
“Even after 14 years, I still fear recurrence. There could be weeks that go by where I don’t think about cancer. Then I get an ache or pain, there is always a little whisper telling me that it could be cancer again. The recurrence freakouts do lessen as time passes, but the fear is always there.”
Why is Fear of Recurrence in Breast Cancer Survivors So Common?
Fear of recurrence is a common concern for all kinds of cancer. Often, it has little to do with your true risk of recurrence, as some people simply have more fear and anxiety than others. Perhaps unsurprisingly, people who suffer from depression and anxiety before their cancer diagnosis are more likely to have anxieties and fears regarding recurrence.
According to one study from 2012, people diagnosed with breast cancer at a younger age (between 18 and 45) are more likely to have a fear of recurrence than older patients. Some scientists believe your fears about recurrence may be more significant if you have frequent GP visits or a lot of common ailments (cold and flu). Other studies have found mothers experience the highest levels of fear about cancer coming back, no matter their age or background.
Ginny Dent Brant, a counsellor and wellness advocate who battled cancer and wrote the award-winning book, Unleash Your God-Given Healing: Eight Steps to Prevent and Survive Cancer explains how the fear of recurrence motivates her. She explains,
“Recurrence is every cancer patient’s nightmare. Once you’ve been through a cancer journey, you don’t want it coming back. The fear of recurrence is what motivated me to make productive lifestyle changes — changes that enhance my immune system and lower my risk of recurrence”
Notably, visiting the Cancer Research UK forum shows how common fear of recurrence can be. There are 952 posts on the forum related to the worry of returning cancer. Many discussions about a possible recurrence revolve around something simple, like feeling “tiny lumps” in the breast or noticing a change in well-being.
What Triggers Fear of Recurrence?
According to Kathleen Ashton, PhD, fears about recurrence can start the day someone is diagnosed, and tend to worsen when you’re not having regular contact with a medical professional. Ashton believes the fear sets in when people stop focusing all of their energy on actively fighting their cancer. She notes that during cancer recovery:
“Treatment consumes your life. You are doing something every day to beat your cancer. When your treatment ends, you are no longer doing things to actively treat your cancer.”
Professor Gerald Humphris from the University of St Andrews says that fear of recurrence tends to vary quite a lot throughout treatment too. Your feelings of anxiety might be heightened by things like visits to the doctors or environmental triggers, such as seeing an advert about cancer or having a future family event to look forward to.
Physical symptoms such as small lumps or discomfort associated with the previous breast cancer diagnosis can also cause fears to rise to the surface. What’s more, as time passes by, some people feel their fear diminish, while others feel more of a threat. As Gerald Humphries say, some people don’t dare assume they’re really free from cancer:
“They may see this as a protective strategy so that they are not hit as hard emotionally if cancer does come back.”
Understand that Fear and Anxiety is Normal
Fear of recurrence can be a constant and debilitating issue in a survivor’s life. The stress of worrying about whether cancer may return can be like constantly waiting for the other shoe to drop. Even anniversaries, when you think you should be celebrating another year of being “cancer-free”, can be anxiety-provoking. A post from “Stormyseas” on the Breast Cancer Now website highlights this well:
“Although my cancer was caught early and there was no lymph node involvement, complications during the first attempt at surgery made me realise how quickly you could lose someone and makes me feel guilty about the worry and stress my family must have gone through. Anniversaries bring this all back and it plays on my mind.”
For many survivors facing the fear of recurrence, the anxiety can cause guilt as well. You find yourself wondering why you’re not feeling amazing because you’re “cancer-free”. Some family members can also have a hard time understanding why someone would feel nervous, sad, or fearful when their battle with cancer appears to be over.
While family and friends see a hero, beating cancer, survivors often look in the mirror and see uncertainty. As “Alone” on the Breast Cancer Now forum says:
“I miss the old me. So much. To the point where I’d give anything to just have one more day feeling happy and normal like I used to before I found the lump. To not have every single day since be preoccupied with awful thoughts and anxiety about the future.”
It’s not unusual for breast cancer survivors to find themselves returning to the doctor more regularly to check on aches and regular aches and pains because they’re scared the cancer is back.
How to Cope With Fear of Recurrence
Everyone experiences fear of recurrence differently. The key to managing your anxiety is finding a coping strategy that works for you. Start by figuring out what’s most likely to trigger your anxiety. For most people, worries about cancer returning are often prompted by things like an anniversary, news of someone else being diagnosed with cancer, or physical symptoms like pain.
Once you know your triggers, have a plan for how to self-regulate and manage your emotions. If you’re worried about a physical symptom, speak to your surgeon or doctor to get answers. Don’t worry about asking too many questions – your doctor will be used to this. If you’re concerned because of something you’ve heard or seen, try to find ways of distracting yourself from thinking about cancer.
Other strategies include:
- Getting support from friends and family: Your loved ones are still there to support you after your fight with cancer is over treatment-wise. You can also speak to other people who understand your situation on forums. Often, it can be easier to talk to strangers, as you’re not as concerned about being judged. Talking to other cancer survivors also gives you the comfort of knowing someone else knows what you’re going through.
- Look after yourself with healthy living: Focus on finding ways to care for yourself. Exercise and eat well. Focus on learning how to cook healthy meals and make a plan for regular exercise that’s suitable for your fitness level. Setting new goals for wellness to focus on can give you something to work towards – a little like the process of fighting your cancer. Working on your health also helps you to feel like you’re in more control of your life. You can expand your abilities to be healthier by getting your nutrition and fitness profile based on your DNA test.
- Consider counselling: Therapists, psychologists and social workers can all offer extra support to people dealing with their recovery from cancer and their fear of recurrence. These professionals understand the fear of recurrence in breast cancer survivors and other cancer patients. Cognitive Behavioural Therapy can be an excellent way to manage your fear-driven or negative thoughts so that you can enjoy your day-to-day life.
- Join a support group: Other cancer survivors with similar fears of recurrence often form support groups. Speaking with others experiencing the same fear and anxiety as you can be an excellent way to cope with your feelings and gain support.
- You can also watch YouTube videos, such as this one from Breast Cancer Network Australia, discussing how some people manage the fear of recurrence.
Fighting the Fear Takes Time and Tools
It’s important to be patient with yourself if you are suffering from a fear of recurrence. This experience is more common than you’d think, and it’s natural when you’ve dealt with something as life-changing as breast cancer. Be patient with yourself when you notice yourself struggling. For most people, the fear will get better over time.
Managing your anxiety, in general, will help you cope with the fear of recurrence. Anxiety-reducing techniques include regulating your nervous system with activities that help reduce your stress. For some people, breathing exercises work quite well to calm the nervous system. For others, fresh air and a walk in nature with a friend helps with anxiety. Instead of sitting still and feeling frozen with fear, do a stress-relieving activity. Don’t hesitate to book a counselling session if you need professional help coping with your fears.