A unique feature of BRiC is its collective voice. The summaries of our guided weekly discussions (see Knowledge Exchange) provide an excellent resource for the public, showcasing the many challenges we face and our coping mehcanisms.
It is equally important that the collective voice of BRiC reaches professionals such as those practicing in oncology and medicine so that an informed understanding of the mental health challenges facing women in survivorship is provided. This we believe can aid in the effective communication between oncologists/medical practitioners and patients to promote ways that can better cognitive and emotional health in breast cancer, and empower women who struggle in survivorship.
Here are brief summaries with key points of the most pertinent issues we face, and suggestions for actions to implement:
1. It's back: Fear of reccurence / progression of disease
Fear of recurrence can be an acute or chronic (overwhelming) fear in primary breast cancer dominating our thoughts and interfering with daily life when:
- Active treatment ends, continuing into survivorship, fuelled by vigilance for symptoms of recurrence
- We experience symptoms that could be signs of recurrence: Almost all of us experience fatigue, bone pain, coughs, ambiguous scan results, lumps requiring biopsy
Fear of progression of disease in secondary breast cancer is fuelled with long delays waiting for confirmation of recurrence, or symptoms that are dismissed by the medical team
How do we cope?
- Some seek help straight away.
- Others wait for several weeks to see GP to see if symptoms go away.
- Others are scared of going to the GP as the fear of the unknown causes stress.
How can we manage fear of recurrence/progression of disease? Fear in the face of threat is a normal response. Neuroscientific research suggests that by boosting cognitive efficiency we can better manage our emotional responses when living with the long term side effects of traumatic experiences. Cognitive flexibility can help us balance and manage our expectations and attention for signs of recurrence and progression of disease. It can aid in our decisions on what to do when we become aware of relevant signs.
What do we need? Cancer undermines our controllability thus fuelling fear of uncertainty. We need simple and effective interventions that can boost cognitive control empowering us to manage our emotional experiences without ignoring signs of recurrence. Taking a proactive approach and regaining some control over what we can do to balance our fears and expectations is helpful. Early research from BRiC suggests that cognitive control training can help lower distress in breast cancer with sustainable effects long into survivorship (see here). These results can pave the way for developing and implementing simple and effective solutions for women affected by breast cancer.
2. The seesaw of fear: Anxiety, and how we cope with it
Anxiety, or chronic fear, we discussed, is like the background music to cancer. It is debilitating and exhausting to us because it uses up our mental resources that are already depleted due to cancer house-keeping. We described our anxieties as:
- Panic attacks
- Continuous underlying feeling that something awful is about to happen
- Worrying about things, despite trying not to sweat the small stuff
- Sweating, nausea, shortness of breath, palpitations
- Being greater at anniversaries and around times of scans (scan-anxiety)
- Interfering with our daily routines
- Caused by the new set of challenges post diagnosis
How do we cope? ‘Stop, look, breathe’
While anxiety can be debilitating, it is an emotion that signals something important, so it cannot be ignored.
We discussed how meditation breathing exercises can encourage calmness can work by ‘balancing’ brain resting state (i.e., DMN: default mode network). This exercise was popular amongst BRiC members.
Other ‘calming activities’ included: Visualisation during scans, Knitting, Colouring, Crochet, Yoga, Religious activities, Cleaning, Pilates and Gardening, adjusted to our energy levels of course.
Singing in a choir, group activities, laughter yoga and comedy were amongst other activities for managing anxiety.
What we all felt was gratitude, and we wanted to cry, because crying we have found can relieve stress. Research has shown that crying can facilitate homeostasis. Not all of us can cry, we feel numb, frozen, and find it difficult to cry. Some of us are scared of crying and its possible impact on our loved ones. We can find it difficult to communicate our feelings.
Managing anxiety. Our research has shown that by building and strengthening neural networks augmented in cognitive flexibility we can empower the brain to regulate feelings of anxiety and our experience of fear. So exercises that enable and empower brain networks involved in governing every day working memory and cognitive control can be useful. Here, increasing cognitive resilience can help improve emotional resilience towards managing anxiety.
What do we need? We agreed that we need more empowerment over our fears and anxieties. Affordable, simple interventions that can boost cognitive resilience can help. Taking back control can help, and this can be achievable through exercises boosting cognitive flexibility. However, not one size fits all. We are different, with varying needs, so tailored simple exercises can benefit us.
.....more to come - watch this space!