Some evidence* suggests that nearly 80% of women with a breast cancer diagnosis experienced PTSD for at least
one year after their diagnosis.
As a network, our experiences are diverse, including women with primary breast cancer, recurrence, and secondary breast cancer. Some of us had finished our active treatment, while some of us were still undergoing treatment for primary and secondary breast cancer. Many of us shared that we experienced insomnia, nightmares, flashbacks and panic attacks. Some of us described our minds going into over-drive and our efforts to manage, as well as feeling disconnected, or, conversely, highly sensitive. Some of us have been diagnosed with depression and/or anxiety.
Naz explained why anxiety, depressive vulnerability and PTSD can be seen as ‘normal’ responses to an ‘abnormal’ set of adverse events and experiences. For instance, depression is a natural response to loss and trauma involving helplessness and despair; anxiety and worry are natural responses to profound, single, or prolonged sets of fearful experiences, particularly when they are beyond our control and involve uncertainty, fuelling our stress responses.
What happens when we are confronted with life threatening events involving significant degrees of uncertainty?
Naz has mentioned us that our amazing brains have evolved to respond in
ways that protect us and aid our survival. So, if our goal is to be vigilant to
a potential threat awaiting us, the emotional neural networks in our brain will
be on high alert, responding continuously, sometimes on over-drive, impacting
on stress hormones such as cortisol. Our cognitive systems in principle help us
to regulate our emotions, but the emotion - cognition network is highly
connected so that in trauma, our cognitive systems take a backseat while the
emotional networks keep firing.
Naz has shared that evidence which shows that in anxiety especially, a system called the default mode network, a network supposed to recharge our brains at resting state, and the amygdala, an organ key to experiencing fear, become highly active. This is linked with a prolonged experience of anxiety symptoms well after the event, even for years to come. The brain adapts to this vigilant response and clinical disorders can develop because it is simply too much for the body to take on.
The article* summarises several PTSD symptoms, many of which were experienced by the group including: Emotional numbing, or distancing, because the brain goes in protective mode. Poor concentration. Lapses in attention and poor memory.
Why does this happen?
Naz has explained that our emotional networks prepare us for danger which means our cognitive systems, which have a limited capacity, need to work harder to help us regulate powerful emotions, such as intense fear.
Almost all of us had vivid memories of our diagnosis and experienced a range of powerful emotions such as fear and anxiety which continued during our treatment, for instance, surgery, or emergency admissions during chemotherapy. Some of us described witnessing deeply distressing scenes while in hospital, for instance someone witnessed a heart-attack, as well as other breast cancer patients in various stages of illness or treatment. Our heightened, and sometimes overwhelming feelings continue, not only during active treatment, but following it, for instance, when we have scans, or when new symptoms arise which require investigation. For those of us living with secondary breast cancer, these intense emotions are ongoing and relentless.
Some of us had experienced trauma prior to our diagnosis of cancer, for instance neglect in childhood, or abuse. As horrific and distressing as these experiences are, and especially challenging when they were followed by cancer, it became clear to us that the experience of trauma in cancer presents unique challenges: when we think of trauma as a result of war, abuse, a serious accident or crime, the task facing the individual is to move on in their life after these terrible events and experiences. However, in cancer, the threat to our lives comes from within us. We cannot flee from our selves and our body represents the source of our fear. For many of us, especially, but not solely those of us living with secondary breast cancer, the threat of recurrence and progression of disease is ongoing and very real. It is not something we can put behind us and our survival may depend upon our ability to be vigilant to symptoms which we need to report to our doctors.
Like it or not, we continue to take our cancer forward with us.
Very few of us had been able to share our feelings with our loved ones, partly because we did not want to worry them; because in our gratitude to be alive, we felt we could not share our contradictory feelings, or we felt under pressure to 'move on' and 'put cancer behind us.'
According to Naz it is possible to manage and regulate PTSD, but our brains will not be working with us to eradicate it because of the way they have evolved to ensure our survival. We can, however, build our cognitive strength towards resilience. This can then help us to regulate our responses over time, strengthening connectivity networks in our brains. Naz explained that there is much scope for understanding and managing PTSD through understanding the cognitive functions behind our emotions.
In terms of psychological support, some of us reported positive experiences in terms of accessing psychological support in a timely manner which was flexible enough to meet our needs. However, most of us felt cast adrift and either had limited support or we had found sources of support ourselves. Most of us had not even been told about our potential psychological vulnerabilities.
What can help?
We shared
that counselling, CBT, mindfulness, yoga and in some instances, medication, haveall
helped. Opportunities to talk and share as a group were invaluable because they
both validate and normalize our responses - we could say 'What you too?' and
breathe a sigh of relief we are not alone.
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