Saturday 30 March 2019

Weekly Discussion Summary ~ Breast Cancer Surgery

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Mastectomy - single or bilateral. Lumpectomy. Mammoplasty. Quadrantectomy. Reconstruction - immediate or delayed. Implant. Skin-sparing. Nipple-sparing.

These are just a few of the words used to describe our surgeries to remove breast cancer, and, by those of us who have opted to have reconstruction and in this week’s discussion, we explored the impact of breast surgery on our self-esteem and self-image.

When we are first diagnosed with breast cancer, we are in shock, emotionally traumatised and many of us reflected that we had found it hard to think clearly about the surgical options that may be open to us. When we hear that treatment may mean removing one or both breasts, or removing part of one or both breasts, understandably, our focus is to rid our bodies of the cancer. Many of us found it difficult to make decisions about whether we wanted immediate reconstruction or balancing surgery as we lack confidence and the knowledge to do so. We shared that we had often made decisions without fully appreciating the risks, or, we chose to delay reconstruction without realising that we may face a long wait to get this done later. We are vulnerable and frightened.

For many - but not all - of us, our breasts are a huge part of what makes us feel female and sexual beings. Some of us have fed our children from our breasts, some of us feel deep grief that we will be unable to breast feed our future babies. 

For some of us, breasts are an integral part of our sexuality, both in terms of how we look and how we feel. We mourn the loss of, or the changes, to our breasts. Even when reconstruction is a success, we know that we now have “false” breasts. We may feel less womanly, less sexual and less confident in our appearance or our sense of self. Some of us hide our bodies, even when others would be unlikely to notice what we see as imperfections and imbalances. 

Some of us choose to remain “flat”  - that is to say we do not have a reconstruction. Sometimes, we wear a prosthesis, sometimes not. 

Irrespective of our surgery, our body image, our self-confidence, is affected. We have to adjust to fundamental changes, sometimes with limited choices. Intimacy following breast cancer surgery is a subject in itself, and it is, for many of us, tied intrinsically to how we feel about our new breasts. The impact on us may be different, depending on whether we are single or in a relationship, and if in a relationship, whether our partners are supportive.

Those of us at the start of their treatment, perhaps awaiting surgery, described fear and sadness at the prospect of losing their breasts, and for some, hopelessness at the thought of ever being intimate again after surgery. Other women later down the line offered reassurance, that we have healed, that we have been able to come to terms with loss, including the loss of our breasts or part of them. 

Some of us do not associate our breasts with our sexuality. Some of us find it hard to have only one breast and feel that being asymmetrical is a struggle. We feel very strongly that the choice to have a breast removed and to remain flat should be straightforward and respected. This is particularly pertinent for women who have had a single mastectomy and for whom surgery to balance them out ie to remove the other breast and achieve symmetry is not given the same weight as reconstruction. This surgery is not offered routinely and is only offered after counselling. Women reported feeling belittled or dismissed when they either declined reconstructive surgery, or requested a mastectomy to achieve symmetry.  Such a reluctance may push us into going for reconstruction as it is common to seek balance rather than lopsidedness. We are angry that doctors presume to know what we want and we want to be supported in making our own decision. It also seems ridiculous that a straightforward mastectomy is far more cost effective and has less risk of complications than reconstruction surgery, and yet so many surgeons are reluctant to perform a mastectomy on a healthy breast in favour of a complex, riskier reconstruction.

Many of us had experienced complications following reconstruction, including wounds that are slow to heal, infections, unsightly scars and a few of us reported operations that fail completely and reconstructions have to be removed or re-done. 

Reconstruction can sometimes lead to ongoing discomfort and pain. 

Reconstruction can be done from our own body tissue or with implants, and the operation does come with risks. It often involves several surgeries, even when it goes smoothly, and can be a long drawn out process, which is disruptive to our lives. On the positive side, many of us had experienced successful reconstruction, often at the same time as mastectomy or lumpectomy, with no complications and an excellent outcome. 

The degree of our contentment with reconstructed breasts varies: some of us are very happy with our new breasts but many also find them uncomfortable, almost alien. They can feel hard and heavy, and have no feeling in them. Some of us regret having reconstruction and wish we had stayed flat. Some of us would like to have reconstruction but are unable to due to medical issues. 

The decision not to have more surgery is one that many of us make, including sometimes but not always those of us with secondary breast cancer. We feel we have spent sufficient time “under the knife” and our priorities have shifted so we prefer to avoid the demands of surgery and would rather retain our lopsidedness or flatness. For others, the decision to remain flat is simply a preference and many of us are extremely comfortable with this. Modern prostheses are quite realistic and comfortable for many of us. For some of us, failed reconstruction (often after several painful attempts and subsequent complications) means that remaining flat is our only option. Learning to accept this isn’t always easy, but we find the inner strength and determination to do so. There are also reasons why wearing a prosthesis is impossible, due to pain from scarring or lymphoedema. 

What became clear from our discussion is how rich and varied our views are, that we want to feel in control of our bodies and the decisions made about breast surgery. We want to be informed and consulted, not rushed into decisions we might later regret. We are grateful to have our cancer treated, the tumours removed, but we also want our psychological health to be considered. We want to feel we are individuals and that our views are respected and supported, our feelings validated - what happens in the operating theatre changes far more than our physical appearance. 

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message via Facebook.

Saturday 23 March 2019

Weekly Discussion Summary ~ Cognitive Enhancement

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Forgetful? Can’t follow conversations? Forget names, or, words in the middle of sentences? Get the day wrong? Lose your train of thought? Can’t concentrate? 

Yes. Oh yes! 

These lapses are all too familiar to those of us diagnosed with cancer - it’s as if a brain fog descends and we need the grey cloud that is ‘chemo-brain’ to lift. 

We’ve talked many times about the phenomenon of “chemo brain”. However, this week our discussion focused on “cognitive enhancement” i.e what we can do to help manage the effects of ‘chemo-brain’ following a breast cancer diagnosis.

We know from our previous discussions that the reasons for impaired cognitive functioning are complex but can be linked to two factors: the effects of aggressive treatments for breast cancer AND the emotional trauma of the diagnosis itself - because the stress and anxiety associated with a cancer diagnosis has a similar effect to post traumatic stress disorder (PTSD) on the brain.(If we can hold in mind the significant emotional and psychological impact on the brain it can help to explain why people who have not had chemotherapy also experience chemo-brain.)

Some of us wondered whether our difficulties related to menopause, or menopause-like symptoms?

Naz explained that treatments such as tamoxifen and letrozole strip our bodies of oestrogen. Oestrogen is fuel for brain function and is a vital hormone enabling the binding of information synthesis, and it affects white matter integrity.  

Some of us wondered whether our experience of cognitive decline followed a similar path to the natural process of ageing? 

Naz told us that the brain is affected in a way that is similar to ageing, but the effects are far more dramatic - brain matter integrity is compromised and structure is reduced, causing a disruption in communication across those structures. 

We wondered if there were any supplements we could take for cognitive enhancement, and a supplement for ADHD was mentioned.

Naz explained that breast cancer diagnosis and treatment affect our brain in ways that are rather different to how the brain is affected in ADHD, despite some similarities. Also, a wider network is affected and the trajectory of the effects are different. 

Our members, who are women with primary and secondary breast cancer diagnoses, described a variety of memory and cognitive function failures, leading to a reduction in self-esteem and self-perception. This can have a significant detrimental effect on everyday life as we struggle in our work and our relationships. 

Naz told us that the good news is that cognitive function can be enhanced and the brain’s plasticity means that new neural pathways can be built and existing ones strengthened. Cognitive function can be improved through regular practice of targetted exercises, and continuing to learn new things and keep our brains challenged and active is key. 

Alongside this, self-care is so important, so that we don't become emotionally embroiled in feeling less competent than prior to diagnosis. 

Some of us had continued to work during treatment. We wondered if that helped us to stay sharp and to suffer fewer cognitive difficulties? 

Naz told us that while working has benefits for some - and indeed maybe a necessity - we do not know how working during, or indeed not working during treatment, affects our longer term cognitive efficiency. She reminded us that trying to get our brains to work harder when they may already be struggling to cope may not be a good thing. 

Some of us shared that we practice brain training and that we had found learning new skills could be helpful for focus. Activities that encourage us to co-ordinate brain and body may be particularly useful, perhaps playing a musical instrument or dancing. Likewise, creative, absorbing activities are also helpful for some. Mindfulness can also be a calming activity that can help in grounding us and facilitating focus.

Some of us wondered if we have simply become used to our new foggy state, perhaps it has become part of our ‘new normal’, part of the adjustment we’ve had to make post diagnosis. 

Many of us write lists and use reminders to help us get through everyday tasks.

Practising good self-care, being our own best friend, being kind to ourselves, can make a big difference to everyday wellbeing. 

Some of us practice brain training games - there are many apps readily available - but some of us find them difficult, and not being able to master them as perhaps we used to can mean they become counter-productive as we feel a failure. However, the research carried out by Naz and her team is showing evidence that cognitive training can reduce vulnerability in breast cancer. 

Naz told us that it’s important to persevere with ongoing learning activities and challenges that push us out of our comfort zone. 

This photo is part of a project led by group member Diane to represent how ‘brain fog’ feels. To find out more about her work please visit her facebook page Hands 4 Wellbeing: 

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via Facebook. 

Saturday 16 March 2019

Weekly Discussion Summary ~ How it feels to be diagnosed with secondary breast cancer

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How it Feels to be Diagnosed With Secondary Breast Cancer

Alone....Devastated...Isolated.. Shocked... Abandoned....Unsupported.

These were just a few of the words used by women living with secondary breast cancer to describe their feelings in this week’s discussion.

A few women had been recently diagnosed with secondary breast cancer after learning to come to terms with their diagnosis of primary breast cancer, others had been diagnosed with secondary breast cancer some years ago, and a smaller number had received the news that they had secondary breast cancer when they first presented i.e they did not move from being treated for primary breast cancer and then go on to develop secondary breast cancer, and instead had to deal with this shock immediately.

We heard that living with secondary breast cancer feels like charting unknown territories as women try to live the best life they can, and live it to the full, all the while knowing that it is not going to be as long as they hoped, that maybe they won’t get to see their young children, or their grandchildren grow up.

We heard how incredibly lonely and heartbreaking it feels not to be offered the same amount of support and attention received during treatment for primary breast cancer.

We heard how marginalised women feel when there is so much emphasis given to “moving forwards” after active treatment. There was a plea to remember that women with secondary breast cancer only finish treatment when it stops working and no options are left for them.

We heard that women with secondary breast cancer are afraid of scaring or upsetting women who are currently in the position of being “NED”. We heard that they feel guilty for their feelings when they hear about others moving on with their lives when they cannot. 

We heard how it feels to try to live with uncertainty about the pace of progression. We heard that women do not want to be defined by their disease; they do not want to be seen as “terminal”. They want to be valued for who they are, to be loved and supported by their family and friends. They do not want people to pretend or avoid their situation, they need their position to be held and validated but they also need support to continue to participate in every day life, to be “normal.” Women strive to live the best in every moment, even if that moment was not what they had wished for.

Some women manage to continue working, others have had to reluctantly relinquish careers. Women relayed an experience of long periods of stability in their health, sometimes punctuated by periods where they are very poorly, perhaps with fatigue, perhaps following surgery or having had cyber knife treatment, for instance. Whatever stage women are at, they continue to contribute to their children, families and communities.

We heard that women find it hard to cope with the limited understanding they encounter about secondary breast cancer. This widespread ignorance is isolating and they have to make difficult choices about what to share and how to present themselves.

We heard women share that when they were first diagnosed they thought they would never be happy again and of their surprise that it is possible to experience joy alongside sorrow. We heard of the challenge of balancing profound sadness alongside the paradox of sometimes forgetting one is ill at all. One woman told us about her idea of living for three years and how she thought “three years, that’s not so bad, it’s a thousand days - I can do a thousand nice things”. So, she does nice things whenever she can. 

Naz told us that there is little research into the quality of psychological well-being in secondary breast cancer, but what there was highlighted three main points: 

i) the quality of care is low or non-existent (but improving) for women with secondary breast cancer, 

ii) that psychological vulnerability is much higher, but, 

iii) cancer related expressiveness (ie sharing emotions) can help ease some emotional burden. 

In short, the psychological cost weighs heavy, and there is disappointment at the level of care invested in secondary breast cancer.

A few of us reported coping better when they’ve received ‘good quality’ care from a breast cancer nurse or their oncologist.

How can we help a friend or someone we know who has been diagnosed with secondary breast cancer? 

Those of us with a diagnosis of primary breast cancer draw on our experience to be supportive, to listen and hold hands, we try and put aside our survivor’s guilt, enjoy our friendship, do fun things, but be there for hospital appointments and the worry. A few of us shared having spent special times with our friends whose health was failing. Our love is unconditional.

At BRiC we do not draw a line between primary and secondary and instead see both on a continuum. We understand that having a safe and non-judgemental place where we can share our deepest fears can help - a place to talk, to cry and to nourish. 

We are all ears and eyes. We are listening.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via Facebook. 

The photograph is kindly lent to us by Diane, who was given this photograph by a woman with secondary breast cancer: the tree represents how she felt when she was told it had recurred. The healthy trees in the background are her family.

Saturday 9 March 2019

Weekly Discussion Summary ~ Coping with Fear 2

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“Fear following a cancer diagnosis takes many forms - it may exist as constant background noise or visit unexpectedly and violently, causing a panic attack.”

Our discussion this week focused on dealing with fear - for those of us with primary breast cancer, of our cancer returning, and for women with secondary breast cancer, progression. We talked about what triggers our fears, and how we deal with them.

Fear following a cancer diagnosis takes many forms - it may exist as constant background noise or visit unexpectedly and violently, causing a panic attack. It may lessen with time or become magnified. We are naturally vigilant and so aches, pains and unusual symptom can cause anxiety. Appointment letters, mammograms and waiting for test results are particularly stressful. Needing an X-Ray or MRI scan fills us with dread. We line up for our tests and scans and wait anxiously for results, fearing the worst. 

We often face these fears alone, with limited formal support and we deal with the emotional fallout as best we can. A few of us have a friend or family member we can share with, but many of us, irrespective of whether we have primary or secondary breast cancer, deal with these fears on our own, not wanting to worry our loved ones, or feeling that their 
patience runs thin if we try to talk about our concerns.

Common triggers for increased fear are forward planning, renewing documents, birthdays and special occasions. These seemingly joyful events lead us to wonder if we will be here to see more anniversaries. For many, a strong fear is not seeing children grow up and not being around to celebrate major milestones with them.  Being unwell generally reminds us of how precious our health is, and for those on continuing treatment the side effects often render us ill and tired.  

Many of us don’t look very far ahead as we fear we won’t be here for future plans. We shared that the worst time is often the middle of the night when, unable to sleep, our fears may take on monstrous proportions.   

Those of us with a family history of breast cancer may feel more at risk and this deepens our fear and becomes something we take forwards with us.

For some, fear is so dominant that it limits our zest for life and we become contained or restricted in what we choose to do. When fear is constant and all-consuming, it becomes exhausting.   
Others described getting on with our lives reasonably well when things are going smoothly, but when additional stressful events hit us then the fear rises and compounds our anxiety, and we beat ourselves up for not being able to cope.

We often use metaphors and analogies to describe how the fear feels: one is based around the word CANCER itself, which appears in capital letters in the forefront of our mind at diagnosis and is so large and dense that there is no way through, round or over. 

As time goes by the word gets smaller and we may find we can see through it or go round it, and sometimes it fades away into the background, perhaps into nothing.   

Another is seeing the cancer as a gargoyle like creature who sits on our shoulder shouting CANCER in our ear.  We can knock it off but it follows us around, mostly quiet and at a distance but sometimes sneaking up close and demanding our attention. 

We use many ways to cope with our fear, one being to keep busy and not dwell on what might happen. Some have worked hard to accept that some things cannot be changed and that a healthy resilient approach is to live for the day and enjoy the moment. Some of us live with the attitude that worrying won’t change anything and will only spoil today. Coping strategies include imagining the worst that can happen and turning it into a ‘hot spot’ thought. Then realising  that it probably won’t be that bad, but working through some practical solutions to resolve it. Sometimes wallowing in the sadness and fear and really feeling it can help, as long as this is time limited. We might follow this with a treat, some self-care – perhaps a bath, some chocolate, a walk. 

We agreed that more needs to be done to support us psychologically. Our group is a place where women can share their fears, knowing that they will be listened to and understood.

If you are a woman with a breast cancer diagnosis, you live in the UK and you would like to join our private group, please message us via Facebook. 

Saturday 2 March 2019

Weekly Discussion Summary ~ The Positivity Cloak

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“......wearing the so-called positivity cloak can make us rigid in our approach and prevent us from exploring and appreciating the wide range of emotions that....make us human.”

In this week’s discussion, we explored whether the relentless pressure of “positivity” and “positive thinking” is helpful.

In our society, to be seen as “positive” is strongly linked with success. Positivity is about being goal driven, and, we are taught that the right attitude can help us overcome challenges. With a positive mindset, there is no room for sadness or anger and negativity is seen as destructive.

Naz explained that while being positive in the face of adversity can be adaptive in the short-term, being positive in the face of adversity can actually undermine us - wearing the so-called “positivity cloak” can make us rigid and prevent us from exploring and appreciating the wide range of emotions that not only pave the way towards resilience, but make us human. 

Naz explained the concept of ‘emotional agility,’ or what she called emotional and cognitive flexibility, is something that current neuroscience research is interested in. This refers to the ability of the brain to embrace (not only accept) the wide range of our experiences, of negative as well as positive emotional experiences. We are complex, so taking a rigid approach in favour of positivity (or negativity for that matter) is counter productive.

As women with primary or secondary breast cancer, our responses and emotions were diverse and complex. However, many of us shared that we had been surprisingly upbeat during and after our treatment. Often numb and in shock, we wondered whether distancing ourselves from our emotions and the full force of what it means to have, or have had breast cancer does not hit us until we feel in a position of relative safety. We rarely cry - privately or publicly - and instead focus our energies on dealing with the demands of treatment. We wear a positive smile to protect ourselves and our loved ones. 

For women with primary breast cancer, expectations for 'recovery' after active treatment has finished can make it even harder for us to get in touch with these feelings as we are not only seen as ‘better’, the gratitude we feel at having a second chance, and 'bouncing back' means we easily push away any negative feelings. We don’t want to appear weak. 

Whether we have primary or secondary cancer, we struggle to find our voices and so often, we hide our fears and losses behind a mask of positivity.

Naz told us that the brain continues to make sense of the impact of the trauma, which unfolds in different ways over many years. The more flexible our brains, the better we can adjust to changing emotions. Our emotions speak to us, they signal something important - there are no 'negative' or 'positive' emotions - every emotion we experience is adaptive, it wants to protect us, in relation to the situational demands we experience. It is counterproductive to be unable to switch and embrace the different emotions we experience. We need to move between them,  to embrace, experience, and endorse the range of the complex emotional experiences we go through. 

Emotional complexity is emotional richness. It's power. It's flexibility. 

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message.

Image credit: Buddha Doodles whose images are certain to lift the spirits!