Weekly Discussion Summary ~ The Language of Cancer

The Language of Cancer

In research literature, we are ‘survivors.’*In the media, we are ‘warriors.’* We are ‘fighters’, ‘battling’ cancer through cancer. We are described as ‘positive,’as ‘brave,’ ‘inspirational.’

In this week’s discussion, we shared our views and feelings about the language used to describe the experience of breast cancer.

Whether we are going through treatment for primary or secondary breast cancer, or, we’ve had breast cancer , we are all impacted by our diagnosis. We live with the consequences, with our changed bodies and minds. If we have been given an NED diagnosis - no evidence of disease following a mammogram or scan - we are supposedly in remission.  A temporary state of being, with the fear of recurrence or spread very real, and many of us take medication to help prevent this which brings its own side effects. If we have secondary breast cancer we live with cancer on a daily basis, continuing with treatment to help prevent progression. 

A few of us do feel that we are fighting cancer, engaged in a battle with cancer. This often resonates with us during treatment and because the treatments are so harsh and often debilitating.  Chemotherapy can be particularly aggressive. The image of fighting off the enemy, cancer, may be useful to us in maintaining a positive mindset. We also identify with the battle scars, the mutilation that is breast cancer surgery, and the mental scars that never heal.  Internal battles are real to us as we struggle with pain and fear. The image of the warrior ready to fight, to stand up for herself, ready to do battle if she needs to and to fight with all her being.

To say that someone has lost their battle or fight with cancer implies that the person hasn’t fought hard enough, they’ve somehow allowed the cancer to beat them.  The media uses this terminology all the time, announcing that someone famous is fighting cancer. Obituaries often say that someone has passed away after a long battle/fight with cancer, bravely borne. How can we be brave in the face of something that we didn’t choose, that we have no control over? 

Survivor, for those with a primary diagnosis who have finished treatment, implies that the cancer is gone, we are cured, we are free of the disease. The reality is that it is never over, we are always worried that it will return and statistics prove that we are right to be concerned. For those with a secondary diagnosis, we are living the best life we can, day by day, not merely surviving. Survivor also implies that we have done something right, while those who did not survive did something wrong. In the randomness that is cancer this feels very uncomfortable and can lead to survivor’s guilt, where we feel miserable that we are still here while others aren’t. This can be particularly strong where we have lost family members or where a family history of gene defects is part of our diagnosis. We ask, why us?  We are angry, and yet we feel to blame. The term survivor can also feel like tempting fate. However daunting the thought, we cannot truly call ourselves survivors until we die of something other than our cancer. Then we have survived it. 

Many of us dislike the word ‘journey’ in relation to having cancer, in that we didn’t choose to go down that road, to turn that way. It also implies that there is an end destination, that the cancer journey ends and a new one starts. There is no end.

We may be numb and mute in our search to find words to describe how we really feel about our cancer. It’s like being in a foreign country, and the fight is like the struggle for a breath when we’re under water.  We use the standard terms like survivor in our conversations, our writing, because people around us understand them.  We want to write about, blog about, podcast about, our experiences, in order to help others, and in order to do this we have to use words, we have to share thoughts through language.  

Other people also need to find terms to use to describe us, they need expressions which capture their own fear - the Big C, the worst of all illnesses - and perhaps terms like warrior help them. The terms make sense to other people so why not to us?  Because until you’ve walked a mile in our shoes, it’s so difficult to understand how we feel. 

A more positive term adopted by some of us is 'thriver’. We find our new normal, we move on, we move forward, taking our cancer with us. We can and do thrive, both after a primary diagnosis and also with a secondary diagnosis, in the sense that we are making the most of every day, we are living with gratitude and passion. However, thriver can implies that we are always upbeat, always positive, when the truth is we are often just the opposite. If we are not careful “thriver” can bring with it that “toxic positivity” which can undermine our very efforts to practice our resilience. That might not mean being out there grabbing life, it might mean mean resting, reflecting, convalescing. 

This is how one of our members summed it up:

Don't call me a warrior
don't  call me brave,
don't give me medals
don't give me a parade
I didn't fight 
I didn't win
I didn't choose
I just gave in

I gave in to the doctors
I gave in to the surgeons
I gave in to science that would save my life

But I didn't fight
I didn't win
I didn't choose
I just gave in

We would like you to know that we are not defined by our cancer.  We say: I am. I am still Me. We are, if you must give us labels, women:  partners, mothers, daughters, sisters, employees, volunteers, kind compassionate human beings. 

*I’ve included Oxford English dictionary definitions of these terms for those interested. Words come to mean something different if used often enough in a certain context: 
warrior : (especially in former times) a brave or experienced soldier or fighter.

brave: ready to face and endure danger or pain; showing courage.

fight: take part in a violent struggle involving the exchange of physical blows or the use of weapons.

battle: a lengthy and difficult conflict or struggle.

positive: constructive, optimistic, or confident.

inspirational: providing or showing creative or spiritual inspiration.

remission: a temporary diminution of the severity of disease or pain

survivor: A person who survives, especially a person remaining alive after an event in which others have died.

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

Weekly Discussion Summary ~ Views about charity fundraising methods

Has fundraising for breast cancer research become too closely associated with fashion and shopping? Is the reality of breast cancer trivialised by celebrity endorsements, fashion and glamour?  

In this week’s topical and emotive discussion, we explored our views and feelings about the ways in which charities go about raising much-needed funds for research into prevention, treatment and support for breast (and other types of) cancer. 

Our discussion, which included women with a diagnosis of primary breast cancer and women living with secondary breast cancer, highlighted just how many of us had been involved in fundraising efforts for charities. We run marathons, half marathons, we bake cakes, we make scarves and purses, we do moon and midnight walks. We are proud of our efforts and grateful for the chance to give back - we want to support ourselves and others.

Yes, we are all agreed that funds are needed, and, we recognise that we are living at a time when funding can be difficult to access. What then can charities do to maximise the prospect of securing funds? 

In recent years, the colour pink and the pink ribbon have been used to convey a sign for breast cancer. To add to that, clothing, underwear, beauty products, jewellery, flowers and even tea can all be bought in the name of breast cancer (though some pointed out the charities may only recieve a fraction of the cost).

Many of us have come to detest the 'pinkification' of breast cancer and find the emphasis on glamour, feel-good stories, celebrity endorsement - with the saucy cakes, pink wigs, the ‘nudge-nudge’ taglines, and associations with sexuality - deeply upsetting and even offensive.

We did not all agree. Some of us wear our pink ribbons with pride. We actively support campaigns like ‘Tickled Pink’.  A few of us argued that just because we buy - or are given - fashion products or indulge in a bit of fun does not mean that we are ignorant of the suffering caused by breast cancer. 

Some of us do not feel that the current trend for showing physical scars, and unpleasant, challenging realities is necessary to raise funds. It can also be helpful, some of us thought, that pink is so closely associated with breast cancer since it helps breast cancer charities to distinguish themselves from other deserving causes.

Pink-washing is particularly - but by no means solely - distressing for women living with secondary breast cancer. They shared the emotional impact on them of seeing a disease which will ultimately be the cause of their death portrayed as frivolous and fun. They also expressed hurt and frustration about the lack of investment into research into secondary breast cancer. Since the average life expectancy after diagnosis is 24-36 months, it is shocking that only a paltry 7% of breast cancer research income is spent on secondary breast cancer.

Some of us worked for charities and offered an insider perspective of the challenges involved in successfully running an organisation based solely on donations. The point was made that relatively small donations can make a huge difference to small, local charities and they have a significant impact on the lives of individuals they support.  

Whether we like it or not, fundraising can intentionally or unintentionally project an image of the cause itself. For some of us, this means that charities must consider the image that is portrayed and how the experience of cancer is projected, especially since in this media age we live in, image can be used to communicate the essence of the disease.

We thought there can be a danger in under-reporting or downplaying the reality of breast cancer. Some of us felt strongly that some campaigns undermine our wellbeing and recovery, for example many of us had found losing our hair traumatic. We are re-traumatised by adverts - one example the “Brave the Shave” campaign. Surely, we wondered, it cannot be right that the very charities who purport to support us are adding to our suffering? We understand that our friends and families are helped by the opportunity to show solidarity, but some of us are vulnerable and we need charities to hold our psychological needs in mind.

Unsurprisingly, as women already diagnosed with breast cancer we often feel conflicted by the increasing emphasis given to the prevention of breast cancer. Messages aimed at educating the wider community about reducing their risk of developing breast cancer have the effect of making us feel guilty and responsible for developing the disease ourselves. 

Do the campaigns really capture the reality of how we cope through treatment and beyond? Of our scan-anxieties and rates of recurrence? Of the chemo-brain that we experience? Of the pain and long-term effects we experience? A bigger question is, well, should they? 

Most of us accept that it hard to strike a balance. We appreciate everyone for their individual view and for the respect shown to one another. Here at BRiC, we recognise that we do not all have to agree, what is more important is that we have a space to talk openly, to listen. After all, we are in this together!

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.

Weekly Discussion Summary ~ Is there always someone worse off?

“No matter what you’re going through there is always someone who has got it worse.”

How many of us have compared our own experience of cancer with others who we see as having “suffered” more than us?   

The starting point for our weekly discussion was to look at why we compare our own suffering - usually unfavourably - with someone else’s and whether and how this strategy supports our resilience. 

We quickly found ourselves wondering whether there is an unspoken hierarchy of suffering in the experience of cancer? Are some cancers seen as “better” or “luckier” than others? For example, those of us who had not had chemotherapy felt as though we were not seen as having had a “real” cancer. Or, some of us who “only” had a lumpectomy shared that we did not feel entitled to grieve or mourn because we had not had a mastectomy. 

Worryingly, some of us reported also having had witnessed this kind of response first hand at support groups.

Many of us shared that we had heard clichés like - “if you are going to get cancer, breast cancer is one of the best”, or, “you’re one of the lucky ones”, or, “you can live without your breasts, they are ‘outside’ your body”; or “Don’t be sad, you’re alive after all, that’s all that matters.”

Why, we wondered, do we down play our emotions? 
Why do we compare cancers? Why do we minimise our emotions as a way of coping? 

The obvious answer is that by desensitising ourselves, we attempt to avoid the pain that we feel, and by minimising what are often deeply upsetting experiences or responses, we feel we can cope better. The treatment is “doable”, we say. We feel so grateful, we say.  

Naz told us that while our responses are understandable, our emotions are important signals in communicating what matters to us. Minimising others’ emotions and problems can be linked with a tendency to ignore our own emotions and feelings - a tendency to avoid and deny. To turn a blind eye. Avoid the reality. 

It is natural then, to hide our feelings, to pretend to be fine, to wear the happy smile, so as to appear “strong”. But this avoidance can backfire, our emotions are our “truth” and they become louder and louder. Playing them down poses risks to our psychological well-being and resilience in the longer term. We end up having to use valuable reserves of energy to manage our critical inner voices which so often berate us for not measuring up. 

Often all we really want is an acknowledgment, an acceptance, embracing how we feel. Naz reminded us that to be able to embrace our fears as well as others’ fears and not hide, is strength, not the other way round. 

Worryingly, dominant narratives about cancer (sometimes perpetuated by the media, and even unwittingly by charities) can reinforce this tendency in ourselves.The result is that along with our cancer diagnosis, we are assigned a role to play, the “brave” cancer patient, the “plucky” survivor who has “beaten” all the odds. These narratives can become invisible prisons which silence us and isolate us, undermining our psychological well-being and our resilience.

Our discussion reminded us that acknowledging others suffering can help us recognise our own pain, that if we are brave enough to stop down-playing our emotions and responses, we can also find self-acceptance; that what really matters after the trauma of a cancer diagnosis is that we learn to respect our experiences and emotions, and, that we support one another to find an appreciation and respect for ourselves. 

Here at BRiC, we hold each other’s experiences and individual responses with respect, irrespective of whether we have been diagnosed with primary or secondary breast cancer. We share our problems - we are all in this boat together. 

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. 

Weekly Discussion Summary ~ Antidepressants...to take or not to take?

This week our discussion focused on antidepressants, to take them, or not to take them.

Antidepressant use is a complex issue as there are various different types and they are used to treat other ailments as well as depression.

Many of our members, women with primary or secondary breast cancer, reported taking antidepressant to tackle low mood, anxiety and the PTSD symptoms which may follow a diagnosis of breast. But they are also often prescribed to help with pain and with the hot flushes associated with hormone treatment and early menopause. 

Selective serotonin reuptake inhibitors (SSRIs) are the most commonly prescribed, and include Fluoxetine (Prozac) and Citalopram among others. Serotonin-noradrenaline reuptake inhibitors (SNRIs) are also regularly given and include duloxetine and venlafaxine.  Other more old-fashioned types are still in use, including Tricyclic antidepressants (TCAs) such as amitriptyline, often used to treat nerve pain. 

Although much work is being done to lessen the stigma associated with experiencing mental health difficulties and the taking of antidepressants, many of us felt it can still be seen as a weakness to take them, a sign of being unable to cope.  

Our experiences of taking anti-depressants are mixed - some of us see them as a life saver, others run a mile from them and give them a wide berth. A few of us shared we had felt so ill and unsettled after a single dose that we didn’t persist; but many of us have taken them continuously for many years with no ill effects. Our discussion highlighted that each person is likely to react uniquely to a particular prescription, and our GPs prescribe them for many different reasons. 

Our women told us of many instances where they had successfully taken antidepressants to tackle a condition unrelated to breast cancer, both before and after diagnosis, including post-natal depression, clinical depression, anxiety, bereavement, relationship breakdown. For many, antidepressants have also been helpful in dealing directly with the trauma of a breast cancer diagnosis and its treatment, e.g. coping with chemotherapy, and associated depression, panic attacks, fear and anxiety.   

Many of our women with a metastatic diagnosis reported that antidepressants have helped them to come to terms with their secondary diagnosis. They can can level mood and help with sleep, and many of us are able to function much better whilst taking them. Many of us have also found a low dose helpful in alleviating hot flushes, whilst others who have tried this have not noticed any improvement.

Combining antidepressants with other remedies has provided excellent results for many of us. Counselling, CBT, exercise, meditation, mindfulness - all have helped us to tackle depression, and for some of us, these methods have proved effective on their own, without the medication. 

We touched on some of the problems and controversies associated with antidepressants: we know from previous discussions that there is a lack of understanding about the mechanisms by which these medications 'work'. Naz told us that while we need to cope as effectively as we can, and we need to survive, the longitudinal 'effects' (or lack of) in these drugs are problematic - we expect the brain to take over after a course of antidepressants, but what happens? Many people need to go back on them again. We also don't know how they affect cognitive function. 

Many of us shared that we had been able stop our medication and had found a gradual withdrawal manageable.  Antidepressants may cause side-effects too, most commonly a numbing effect which over time can became unwanted for some of us. On balance though, our discussion highlight that those who found antidepressants helpful are very happy with the support they provide. 

There is a view that antidepressants are prescribed too routinely as a simple option, with not enough focus on alternative approaches to treating depression. However, many of us felt they are part of how we practice our resilience by being aware of our choices and by researching different approaches. For those of us who choose to take antidepressants, they may be a useful short term solution to negotiate the bumpy ride that is a breast cancer diagnosis, or in the longer term, an effective aid to optimum functioning. Others choose alternative routes to wellbeing. Whatever we choose, we decided, it’s 100% ok.

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

Weekly Discussion Summary ~ Breast Cancer Surgery

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.

Weekly Discussion Summary ~ Cognitive Enhancement

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: https://m.facebook.com/Hands4wellbeing/ 

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. 

How it feels to be diagnosed with secondary breast cancer

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 a discussion about secondary breast cancer.

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 heart-breaking 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 women 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.