Fear of recurrence and progression of cancer: BRiC's Collective Voice

The comments that last Sunday evening’s discussion generated, really helped to give us all an insight into the range of feelings that the fear of recurrence and progression of breast cancer creates. It was interesting to read comments from members who’ve had a primary breast cancer diagnosis, recurrence of a primary diagnosis and those who've had a secondary breast cancer diagnosis. Viewpoints from each part of the spectrum are so valuable.

Some members commented that although the fear of recurrence never goes away fully, the longer the period of time that’s elapsed from a primary breast cancer diagnosis, the frequency of how often our thoughts turn to recurrence and progression diminishes. However, it was also acknowledged that often our fear and anxiety creeps upon us without warning after periods of time when we’ve had respite from it. Within the group, it’s acknowledged that this is hard to manage.

Another recurring theme was that even when active treatment for primary breast cancer has finished, seemingly minor aches and pains can lead to the bias of our brains suggesting that we have secondaries growing somewhere in our bodies. Perhaps this is due in part to the loss of confidence in our previously healthy body prior to the development of breast cancer and the vulnerability this creates, along with uncertainty about our future?

There was a feeling also that our family and friends, who only see the exterior of us and who can’t possibly know how we feel inside, want to think of us as being ‘fine now', because they don’t possess the insight into recurrence that we do. This may also be due, in part, to active treatment regimes finishing resulting in our physical appearance generally looking well, with often no outward visible signs of the cancer treatment we endured.

Our predisposition to anxiety prior to our diagnosis of breast cancer was referred to several times and this may impact upon our ability to cope with our anxieties and fears generally, following a diagnosis of the disease.

There was a feeling of sadness too around some of us never fully being able to feel confident about our health again because we cannot totally eliminate the possibility of recurrence and/or development of secondaries.

The emotional value of this group was also really highlighted by those of us who feel that others close to us will never really fully understand our fears because the breast cancer diagnosis didn’t happen to them. As a result, there is a shared empathy that exists within the group, which confirms the life enhancing and affirming nature of our very supportive community. This was very gratefully acknowledged.

With around half of our members living with secondary breast cancer, the experience of those members adds another layer to the fears around recurrence, in relation to how long treatment regimes can achieve stability in the metastatic growth of the disease, which drugs will be accessible in second and subsequent lines of treatment and the emotional toll this takes on our ability to lead a good quality of life. Fears around death and dying are inextricably part of that.

The COVID-19 pandemic has caused millions of people in the UK to feel anxious about their health; we, as a community of people within that, have had an extra layer of anxiety added to our already often-burdened mental wellbeing. Acknowledging that this is an extremely challenging time, which has led to many of us revisiting our fears of recurrence, is essential to help us build resilience. Acceptance that we are never quite the same person we were prior to our diagnosis of breast cancer is part of that, which does not mean to stay that we can’t feel strong, we just wear our strength and courage in a different way to those outside of the breast cancer community.

BRiC's Collective Voice: Uncertainty, and how we cope with it, Jan 17, 2020

‘Confronting, accepting, even embracing fear, according to research, can lower uncertainty. ‘

This week we talked about uncertainty since breast cancer: how it can affect us and what strategies we’ve found useful in managing it.

A key flash point for uncertainty is once active treatment for primary cancer is finished and we are no longer attending regular appointments which give us momentum in attacking our cancer. We have time to reflect and to worry. The enormity of what we’ve experienced sinks in and we wonder what we can do to prevent recurrence or spread. Cancer does not discriminate, it pounces on those who run marathons and eat their five a day just as regularly as it seeks out those who are not as healthy in their diet or as active. We realise that our future is outside our control, and this brings feelings of guilt, why me? And what if? If we are living with secondary cancer, as many of our members are, then stability versus progression becomes our uncertainty.

One of the most uncertain times in a breast cancer diagnosis is when waiting for test results. We have all experienced the agony of this, and a few days or weeks can seem a very long time. Once we know, the uncertainty of what’s next reduces and we can get on with whatever treatment our medical teams recommend to us. Some of us like to take control by questioning and researching our treatment plans, seeking the very best way forward for our particular situation.

How can we minimise the effect of uncertainty on our mental wellbeing? For some, distraction is the key, keeping busy, with work or other activities. The downside of this is that relaxation may become difficult as intrusive thoughts ruin any attempt at taking a break. For others, peaceful reflection, mindfulness and living in the moment helps. Walking in nature and creative hobbies are absorbing popular pastimes. To realise that everything is ok in this moment, right now, works for some, but for others the uncertainty simply overwhelms the present moment. Talking about our fears and sharing experiences helps many of us. Confronting, accepting, even embracing fear, according to research, can lower uncertainty. The brain is so powerful, and the more we allow our vulnerability in and think of it as an opportunity rather than a threat, the more we can shield ourselves from the anxiety inducing effects of uncertainty. For those of us prone to anxiety, the added uncertainty of a breast cancer diagnosis has the potential to be be crippling, but many of us take a pragmatic approach and ‘just get on with it’, not allowing fears related to cancer to add any extra weight. Some of us feel angry and bewildered, and increased anxiety can lead to depression. If we can turn these strong emotions to our advantage we can find a strength and determination to change our lives for the better.

Self-care is an aspect that we embrace in our group, and members report that this attention to our own needs and wants is key to our wellbeing. Some of us make a lifestyle change following cancer, as this can help us to feel that we are doing the best we can to look after ourselves. We might eat healthier, exercise more. Some of us throw ourselves into life with renewed zest, with a feeling that we want to make the most of every moment. Some of us have the urge to give back to life, and take on charity projects or volunteer. Some of us seek out help from professionals to improve wellbeing, this could be a counsellor or a cancer support group or course. Others talk to friends (although many of us find we don’t get adequate support from those who have not had cancer, and we often stay quiet with family as we want to protect them from the worry) and spend lots of time with loved ones, and still others prefer lots of alone time and make time to relish their solitude.

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

Striving With Fear in Breast Cancer ~ Naz ~ HuffPost Blog

"To all the women out there with breast cancer: we cannot afford to break, we cannot afford to give in; because we are women who have a lot of earth shattering work left to do. And we can, in whatever shape or form."

Our very own, amazing Naz wrote this blog, 'Striving with Fear in Breast Cancer' to mark the fifth anniversary of her diagnosis with breast cancer. In it, she shares her mission to promote and translate her research to boost resilience and reduce emotional vulnerability in women with breast cancer. Naz may be an academic, specialising in anxiety and depression for many years, but the fear of recurrence looms as high for her as it does for so many of us and yet she chooses to boldly face her emotions head on:

http://www.huffingtonpost.co.uk/entry/striving-with-fear-in-breast-cancer_uk_5a4e922de4b0f9b24bf315b3?utm_hp_ref=uk-lifestyle

Weekly Discussion Summary ~ Coping with Fear

"It is quite a balancing act between transforming fear into motivation and also accepting fear".

Coping with fear - of recurrence, secondary breast cancer and for those of us with secondary breast cancer, of progression of disease - was the topic for this week's discussion.

Fear is an intense and primal emotion, an almost involuntary response to danger which manifests itself in a heart pounding rapidly in our chest, heightening our senses. Maybe a rush of adrenelin wipes all rational thought from our minds. We feel a strong impulse to hide or flee.

But when we are told we have breast cancer there is nowhere to run and nowhere to hide. Our fears are fuelled by both 'the known' - that we have a life-threatening disease and 'the unknown' - by uncertainty and apprehension, by an outcome which feels completely outside our control.

Our discussion, which included women with primary and secondary breast cancer, highlighted that fear is an ever present emotion experienced by most, but not all of us. For some, the fear of spread or progression of disease is the colour that dominates our emotional landscape, for others its hue is made up of the loss of control, the certainties which were once took for granted. Some are fearful of death, of pain, whilst others fear being the cause of pain to those most precious and beloved to them, or having to say goodbye.

For some of us, fear hits only after we've finished our active treatment, perhaps because we've hit the pause button on our emotions. Our path ahead narrows while we place one step in front of another, we focus on the present, the here-and-now, on what is most important and gives us most peace and joy.

Some of us described feeling almost overwhelmed by our fears, whereas for others, gaining a mastery over their feelings was a means to becoming a protector to their fearful selves. Denial and suppression of this strong primal emotion can, we heard, also be vital to emotional and psychological survival.

For many, the nights are when we feel most alone, when we can no longer distract ourselves as we can in the day. For others, fear is triggered by a scan, or a new pain, reminding us of our vulnerabilities. Perhaps hardest of all are those times when we are unwell, when we cannot practice those things that support our resilience, like yoga, or exercise, or doing the things that matter to us most.

Naz explained that fear is a normal reaction to an uncontrollable trigger with a highly uncertain outcome. However, overwhelming fear uses up a lot of energy and cognitive resources that are needed to start thinking pro-actively, to adapt and to be fruitful.

If we can, instead of being overwhelmed by our fear we can use it to take smaller steps in the darkness, to trust our intuition. It can help if we can strive for an acceptance of our lack of (or having little) control over the situation; if we can see fear as an opportunity, not to influence the outcome, but to help us stride ahead in spite of the uncertain road ahead; if we can use it to help us to focus on those things that we HAVE influence on, how we can make ourselves stronger and happier in spite of the 'what ifs'.

Naz explained that this is NOT an easy task but we can learn, re-thinking, re-prioritising and rewarding ourselves for the little things we can and do achieve. And amongst all, showing ourselves self-compassion when we are at our most fearful.

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 contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Weekly Discussion Summary ~ Dealing with fear of recurrence

How do we deal with and manage worrying symptoms once we've received the 'all-clear' and finished our active treatment for breast cancer?

The end of active treatment for a primary diagnosis of breast cancer carries with it a mixed emotional response - there is joy and exhilaration that we have finally reached what has been our goal and focus for a very long time. But, we are left alone to cope with all the after-effects of treatment and at a vulnerable point psychologically, as our fear of recurrence may dominate our thoughts.

We are encouraged by our treating teams to be vigilant for signs of recurrence, to report any symptom or pain that lingers and disturbs us. It is perfectly natural then, for our attention to be directed towards any signs so that we can detect anything sinister early, to have a sense of control over the course and progression of any possible cancer-related symptom.

Almost all of us described:
i) experiencing pain, fatigue and new symptoms, or health difficulties following treatment,
ii) the dilemma of what to do, when to seek medical advice or what we should see as 'normal'?
Many of us had experienced 'scares' - bone pain, coughs, ambiguous scan results, lumps requiring biopsy - and going through further investigations and agonising waits for results. For most of us, these 'scares' are usually followed by enormous relief at finding out we are cancer-free, but many of us in the group have experienced a recurrence or secondary breast cancer.

Women with secondary breast cancer described a range of experiences - having symptoms dismissed by health professionals, or long delays; while others felt as though they had been struck by a bolt from the blue, sometimes many years after their original diagnosis, at a time when their fears had subsided. Women with secondary breast cancer experienced vigilance in a similar way to women who had had primary breast cancer, but it is directed at symptoms which might indicate a progression of their disease.

Naz explained that being vigilant for signs of threat is known to fuel fear and anxiety. This is because vigilance is often related to a tendency (or 'bias') to see 'ambiguous' symptoms in a threatening way (for instance, do we think that a persistent cough is secondary breast cancer, or, the lingering after-effect of a virus?) We were all aware of the implications that this vigilance has on our day to day functioning, occupying our thoughts, absorbing our attention and energy, especially when we feel ill or are experiencing pain.

How do we cope?

Some of us seek help straight away. Others adopt a 'two-week' rule (or three) whereby we wait for several weeks to see if our symptoms go away. A few of us avoid going to our GPs because we know they will arrange investigations which we will find stressful. Good advice is to try and remind ourselves that we got sick before we had cancer; that cancer is only one possible explanation for our symptoms. It is, however, a challenge to be vigilant to new symptoms, without over-estimating the consequences of cancer (or other) related symptoms.

Naz explained that our ability to direct our attention towards and away from signs and symptoms that may or may not signal recurrence is largely dependent upon our mental flexibility. She explained her view that it might not be the vigilance for threat that is disruptive to us, but our over-interpretation and the way we can get stuck, going over and over symptoms which we as a potential threat - something Naz called ‘inefficient attentional control’. Because when we are diagnosed with a life-threatening illness like cancer, our emotional brain systems tend to fuel attention to signs of threat simply because we want to survive, it is hard to exercise attentional control.

How have you been dealing with and managing possible signs of recurrence?

Weekly Discussion Summary ~ Turning Down the Volume on Cancer

How do we not allow our cancer to dominate our thoughts or define us? How are we more than this diagnosis?

Naz introduced our weekly discussion by reminding us that we had found that cancer is not a chapter in our lives that we can put behind us, but we take it forward with us. We are hypervigilant for signs that our cancer is back or progressing. Our emotional and cognitive brains become out of balance, with our emotional brain dominating as it remains on high alert following our trauma. Naz’s research work looks at cognitive interventions which strengthen the seesaw relationship between the emotional and cognitive brains, exercising and challenging the cognitive brain in order to regulate the emotional brain. 

Many of our members have adopted the popular proven cognitive practices which help to restore the balance, namely mindfulness, CBT and support groups. Our discussion highlighted the value of sharing fears and anxieties with those who understand, and the compassion showed by members for each other's stories was particularly apparent this week.

As you might expect, time is a healer, and the longer a woman shows no evidence of disease following diagnosis, the lower the cancer volume may become. However, for many, fear is constant and upsetting. Many find keeping busy helps, and distract themselves with continuous activity. Poor sleep may find us being visited by cancer demons in the small hours, when anxiety finds a high decibel level. Humour is a great way to dispel fear, and many find spending time with friends and family, doing ordinary normal stuff, is the best way to forget about cancer once in a while.

For those undergoing treatment, the noise of cancer is deafening. Some women turn it down by numbing or intellectualising their feelings. Others are bravely immersing themselves in the high volume and may be feeling desolate, unwell and miserable. However we cope, we are not alone, and our group helps us all through these dark times.

Turning to face our fear through acceptance, and then taking control by concentrating on our own well-being, is helpful. We were reminded that the noise of cancer can be a positive in that it never lets us forget to listen to our bodies, and it makes sure we remember how precious life is. 

Our discussion, which included women with primary and secondary breast cancer, reminded us all that whatever happens, with support and the practice of resilience we can live our best lives, with the cancer noise sometimes gentle in the background and sometimes harsh and intrusive. The seesaw may be out of balance, but we are never alone on it. 

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 leave your name in the comments.

#ResilienceDiscussion

Thank you Debbie for letting us use this beautiful image!

Weekly Discussion Summary ~ To Plan or Not to Plan, That is the Question

This week, the topic for our discussion was 'Planning for the Future.'

Naz introduced this week's topic by explaining the cognitive processes involved in planning for the future - making predictions, being insightful, calculating the possibilities and probabilities of outcomes and managing reasonable goals within the time-frame we have in mind. Following a trauma such as cancer, these processes can be impaired as uncertainty dominates, making us apprehensive. 

Some of us described a reluctance to plan, often due to fatigue leading to a fear that plans will be cancelled, as we don't like letting others down. Fear and uncertainty about our health in the future leads many to look only to the short term, with many planning in small chunks around check-ups. We feel frustration that we can't do as much as we used to, but conversely many have stopped putting things off and are packing lots in to every day whilst also scheduling holidays, concerts, days out and family time. A few have embraced living in the now and retired, planned big holidays, moved house. Others feel life is passing them by. 

Some of us have always been planners, others more 'go with the flow'. All of us described feeling differently about our future after our diagnosis of breast cancer, although whether we have a primary or secondary breast cancer had significant implications. We wondered whether the key to future planning is to live for each day but look to tomorrow as well, to ensure that it is planned to an extent that provides us with the activities and lifestyle we really want. As one lady put it 'I have very little power over the future and all there is now.' 

But, Naz explained that while being in the ‘now’ is good, we are evolved to be goal oriented and to hope for a bright future, to have hopes, dreams, desires and objectives. Our tough challenge is to hold on to and strive towards our dreams whilst accepting that we have little control over the outcome, and, it is this acceptance that is so very hard for us all. 

If you are a woman living in the UK with a diagnosis of breast cancer and would like to join our private group please leave your name in the comments and we will message you with details.

#ResilienceDiscussion

A big thank you to Viv for generously allowing us to use this beautiful photo.

Weekly Discussion Summary ~ Finding the New Me

In this week's discussion we explored the ‘positives’ and ‘negatives’ of living with cancer and its effects and the challenges of understanding the ‘new’ me.

Naz began by asking some challenging questions:
Should the cancer have changed me? For the worse AND better? 
What should my ‘profile’ look like? Stronger? Weaker? Both? 
If both, then how can weak and strong live together in harmony?

Naz explained the huge role working memory plays in our everyday lives and how our responses to cancer can lead to cognitive interference as our working memory is dominated by our vigilance. She believes we need to build resilience. This allows us to develop cognitive flexibility by finding a lightness within our fear and sadness. Bringing together the 'good' and the 'bad' can lead to a new normal which can be special and complete. 

Our responses were diverse: some spoke of physical challenges, and our points of view were partly shaped by whether we were recently diagnosed, living with 'no evidence of disease' or whether we had a secondary diagnosis. We agreed that whether we like it or not, we are not the same, we have changed bodies and feel different. Some of us described feeling comfortable with our new selves. Some of us feel anxiety and fear, a sense of loss and grief for the person we once were. Many of us described seeking new opportunities and discovering a new zest for life, even while experiencing sadness and loss. 

While we could acknowledge that we are different, accepting our new selves is another matter. Many of us experience fatigue, but are reluctant to admit our physical struggles as we don’t want to appear weak, especially at work. The fear of recurrence is strong, but can also be a driver for positive change leading us to adopt a 'can do’ attitude. Many harness this to make life changes, and others say they’ve stopped planning for retirement, preferring to live life now, spending more freely to enjoy the experience of being alive and taking more pleasure in the everyday. 

Some of us look back and cannot relate to who they were before cancer, we are perhaps more emotional, sensitive and empathetic now. Some days we find ourselves grieving for our old selves, we feel lost and want to hide away. Some days we feel strong, we can take on the world. The challenge of being on this rollercoaster is to bring these extremes into balance. 

We learn from cancer that we need to live now. As one member put it: ’The old me was worried about getting old, the new me is scared she won’t get to.’ 

Our overall discussion concluded we are undoubtedly changed. We are weak, AND we are strong. We are darkness AND we are light. We are sad AND we are joyful. 

If you are a woman with a diagnosis of breast cancer and you would like to join our closed private group, please message us on our public page: https://www.facebook.com/resilienceinbreastcancer/?ref=aymt_homepage_panel

#ResilienceDiscussion

A big thank you to Jo for allowing us to share this beautiful image of bluebells.

Weekly Discussion Summary ~ Seeking Perfection

Our Sunday topic this week was perfectionism: the already strong pressure to be perfect and how it may be intensified following a diagnosis of breast cancer. As always, our lovely ladies identified common themes but also confirmed that everyone's experience is unique.

As women living in today's busy world, the media tells us that we should strive to be perfect mothers, sisters, partners, daughters, friends, even perfect patients. All around us are airbrushed images of beautiful women juggling careers and children, smiling through every kind of adversity. Often after cancer we look much like any other woman on the street, well and glowing. We hide our vulnerability behind our positivity, we don't want to upset anyone by mentioning our big secret. Even those who have secondary breast cancer and face a lifetime of treatment and monitoring report striving to maintain the brave faced smile. Fear and vulnerability take a back seat so that we can appear strong for our families. Thank goodness for groups like ours where we can share our feelings and thoughts!

Having breast cancer may force us to make difficult decisions that scupper our long held dreams: for those who have children, we may feel we can't be good mothers, as we may have to hand over their care to others while we are unwell for example; for some, cancer puts paid to having more children; others may not get to have children at all. Careers get put on hold; some ladies choose to stop work, others just aren't well enough anymore so they have to stop. We feel we fall short, that the life we thought we were going to have is ruined. Physically and mentally it's tiring having cancer, fearing cancer, and many ladies can't do as much as before their illness (but it's unlikely that you would know that: they hide it well.)

There are lots of things we feel we ought to be doing. One is running a marathon, or at least a 5k race for life, as soon as we finish our last radiotherapy session. Some achieved this and did well, others succeeded but exhausted themselves, and some didn't have the energy to get out of bed, much less bake for the biggest coffee morning in the world. However we feel though, we do get up, do our best, smile and get on with being positive, almost every day. And if occasionally we succumb to feeling tired and low, and we take to our sofas or our beds, we feel guilty and weak. Not good enough.

Having breast cancer can teach some valuable lessons too. Many ladies report becoming softer, calmer, more relaxed, more approachable. Many ladies have learned to say No, and to seek out what makes them happy and not live to please others anymore. Many care less about what other people think of them. With messy reconstructions, one boob, lumpy bumpy lopsidedness, many learn to dress for comfort not glamour. Our new normal may surprise or upset our friends and family as we relinquish roles we thought were carved in stone, realising we have more choices than we thought we had. Our inner strength, the resilience we build, starts to shine.

Many report that they have been able to let go of high standards and high expectations in favour of enjoying life. We commonly discard housework! We take pleasure in the simple everyday things like walking in the autumn sunshine, enjoying a coffee with a friend, or reading a book. Perhaps for some, particularly those ladies who are older, breast cancer brings an opportunity to take stock, to decide what's important, and to live life our way.

However our breast cancer affects us, none deny that we are changed. Some feel guilty that they got off lightly with treatment or surgery; some feel they've let themselves and others down; some feel like failures, as if it's somehow their fault. Not only can they not achieve perfection, they feel less than good enough. And that's a subject for another discussion.

#ResilienceDiscussion

One Year On ~ Vicky

Earlier I came across this quote, “We all have an unsuspected reserve of strength inside that emerges when life puts us to the test.”, which today is very apt for me.

It’s hard to believe that it’s days away from the 10th anniversary of my primary breast cancer diagnosis at the age of 31.  A small, low grade cancer with no lymph node or blood vessel involvement and with an excellent prognosis.  My Oncologist suggested dealing with it by surgery alone and agreed for me to go ahead and have the family we had been planning (I’d experienced a miscarriage only 4 months before). He told me in the nicest possible way to go away and to never darken the doorstep of Oncology again! So off I went, welcomed my two children, gave a nod of acknowledgement to the 5 year cancer-free milestone as it passed by, got married, next stop 10 years which seemed to be in my grasp until a new bomb dropped.

One year ago today I climbed aboard a roller coaster and was told that I wasn’t allowed to get off.  I can still see that day clearly, extensive spread of breast cancer into the lymph node and bones, treatable but incurable. My world crumbled around me. I struggled to hear what the doctor was saying, all I heard was screaming in my head.  My first words after what seemed a lifetime: "My children are only 6 and 5, I need to be here for them”.

So here we are 366 days on, a year of ups and downs, but life does move forward. There are times when I forget for a few hours, feel normal even, then other times when I cannot shake off the waves of grief and anxiety surrounding what is facing us. It’s a bittersweet moment, because of course being here is cause for celebration, but there’s sadness too as it’s an anniversary which brings our sense of time into sharp focus. Our mind starts to be drawn to the future as well as the past.  

Over the year I ventured back to support groups, made new friends and met some amazing women sadly in the same boat. After joining the psycho-educational group belonging to The Research Centre for Building Psychological Resilience in Breast Cancer, which brings both primary and secondary women together, I was recruited by Professor Naz Derakshan to assist running the Centre along with Tamsin Sargeant. The work we have done together has seen us create this blog ‘Panning for Gold’, as a platform for women with a breast cancer diagnosis to share their stories and showcase their talents.  My first venture into blogging was here, titled ‘Stage IV and beyond…, and since then I have co-written two blogs with Tamsin for the HuffPost UK.

Secondary breast cancer can be an isolating condition as it is so widely misunderstood. It cannot be cured, so the treatment for it never ends and both this and the cancer cause physical side effects. The psychological impact of living with the condition can be crushing.  Thankfully, the online groups are supportive, caring places, somewhere to go where other women understand, where we can share good and bad news and also where there is a mine of information. Sadly over this year I have seen too many women die from this relentless disease, all at different stages of life, many young women with children and those who were denied that chance.  This has to stop, but we don’t have the answers.

                                                                         

So looking back what advice would I give myself upon diagnosis.  Initially I would say it will seem like a living nightmare but gradually you will find a new normal, so it is important to carry on with those tasks which allow you to connect with normal life.  Give yourself time to adjust as your head will be full of questions (a lot of which can’t be answered) and you will feel every single emotion…probably all at the same time and sometimes at inconvenient times. Acknowledge these different emotions and face your fears, otherwise they will rear up and strike when you’re least expecting it. But most importantly, keep the HOPE.





Blogs:

Stage IV and beyond... 
http://bcresiliencecentre.blogspot.co.uk/2016/02/stage-iv-and-beyond-vicky.html

Panning for Gold: Stories of Resilience after Breast Cancer  
http://www.huffingtonpost.co.uk/tamsin-sargeant/stories-of-resilience-after-breast-cancer_b_9997488.html

We Need to Talk about Secondary Breast Cancer
http://www.huffingtonpost.co.uk/tamsin-sargeant/secondary-breast-cancer_b_10247000.html

We Need to Talk about Secondary Breast Cancer ~ HuffPost Blog

What do Jo Malone, Cath Kidston, Maggie Smith, Olivia Newton-John, Jenni Murray and Kylie Minogue have in common? 

They have all been diagnosed with primary breast cancer.

We talk about ‘breast cancer’ as if it is one disease. It isn’t. There are several types of breast cancer which grow in different parts of the breast and at different rates. Some of us will be given chemotherapy, some of us won’t. Some women have mastectomies, others have lumpectomies. Many - but not all us - have radiotherapy. I felt a fraud when I didn’t have a mastectomy for a rare, aggressive breast cancer - but at least I got to keep my breast (someone really did say that by the way).

Whatever our treatment, what really matters to the 57,000 or so people diagnosed with breast cancer in the UK is that we don’t have, or develop, secondary breast cancer. Unlike primary breast cancer, which hasn’t spread beyond the breast or glands under the arm, secondary breast cancer refers to breast cancer which has spread to other parts of the body through the lymphatic or blood system. You might hear it described as ‘advanced breast cancer’, ‘metastatic’, or stage 4 breast cancer. You might also hear about so-and-so who had breast cancer and then developed liver cancer. This is inaccurate - breast cancer that has spread to the liver is not the same as liver cancer.

Do you want the good news, or the bad news?

The good news is that secondary breast cancer can be treated. The bad news is that it can’t be cured. Treatment aims to slow down the spread of disease, to relieve symptoms and give the best possible quality of life, for as long as possible.

Once the initial shock of a cancer diagnosis has receded, for most of us, the gruelling treatments, disfiguring surgery and psychological effects seem like a small price to pay for our lives. The end of ‘active’ treatment (chemotherapy and/or surgery and/or radiation) feels a bit like graduation - we get our big send-off and party. Everyone loves us because we took on cancer, because by being brave and positive we ‘beat’ cancer.

Of course we want to finish our treatment with optimism and celebrate being cancer free. If we are lucky, we pass the first year with a clear scan, then after the second we begin hoping we’ll reach the five and ten year milestones. How much attention do we give to secondary breast cancer? It’s easier to return to denial - this is our way of ‘moving on’. We wear our positivity as though it is a talisman which wards off cancer, as if it’s a well-established fact that by thinking about cancer we might activate some tiny cell into action, putting our lives in peril. We try not to think about cancer, we try to forget.  

Then we get a niggle, a pain, a scan. That old friend, Fear, knocks on the door again. Are we quite as safe as we think we are?

As a woman diagnosed with breast cancer twice, I get a knot in my stomach just typing the words, ‘secondary breast cancer.’ I admit that I’m haunted by the possibility of cancer returning. It’s the sun and moon of all my fears - as inescapable as the day and night, yet unspoken.

Around 30% of women go on to develop secondary breast cancer - these women are mothers, sisters, daughters, friends and partners. It’s the not-so-pink lining which we women with primary breast cancer can hardly bear to face. But what happens when our friends are diagnosed with secondary breast cancer?

I was diagnosed with secondary breast cancer in 2015, 9 years after having been given the 'all clear.' I see women extremely saddened when the friends they have made throughout their initial treatments or through support groups are diagnosed with secondary breast cancer. Though they continue to offer support, for many, this understandably means their own anxieties surface and they begin questioning their own mortality again. Having been there myself, I know this can be hard, especially when you are gaining a sense of moving on. But, this reaction can make it difficult for those of us with secondaries to feel that we belong in the general breast cancer community where the focal discussion inclines towards treatment for primary cancer and its aftermath. The sense of maintaining a positive attitude to ‘beat’ it, can be a challenging theme for those who haven’t been so ‘fortunate’ to keep it at bay. This fear which secondaries sparks in others means we find solace in groups specifically for secondary breast cancer but this then means the whole community doesn’t really talk about it.

~ Vicky

Somewhere along the way, I’ve realised I need to face my survivor’s guilt, sadness and the fear that I too might develop secondary breast cancer. People think that positive-thinking 'beats' cancer. It doesn’t. A cure will only be found by better understanding what makes our cells grow uncontrollably and invade distant organs. We desperately need science to find out why it is that some women find out that their cancer has returned, despite extensive treatment, despite having been told they were ‘all clear.’ We can only do this if we stop hiding and start talking about secondary breast cancer. The more we talk, the more likely it is that we can support one another and the more likely it is that we can press for better and more effective treatments.   "How does breast cancer do that? How do cells escape from an original tumor and nest somewhere in the body, eluding all treatments thrown at the disease and mysteriously "wake up" and start moving around the body again fifteen years later? What gives them the ability to hide? What triggers their activation again? What makes them so resistant to treatments? Why can't they be stopped? How do we know who has had breakaway cells versus those who haven't? We don't know. Nor do we even know the exact number of people with early stage breast cancer who go on to develop secondary breast cancer".

I dedicate this blog to Vicky, Amanda, Shelly, Rachel, Uzma and anyone living with a recurrence or secondary breast cancer. Even though you won’t recognise their names, these women are no less worthy of our attention and celebration.

Tamsin Sargeant, with vital input from Vicky Wilkes

This blog was published on HuffPost UK 'The Blog' 3rd June 2016

Link: http://www.huffingtonpost.co.uk/tamsin-sargeant/secondary-breast-cancer_b_10247000.html?utm_hp_ref=uk-women 

The Gift of Fear – Or How Fear Saved My Life ~ Tamsin ~ HuffPost Blog

We are delighted to be able to share this post with you. Tamsin Sargeant, our Centre's Deputy, writes a blog for HuffPost UK on how using fear in a positive way can become a most powerful and constructive force in her life.

'The Gift of Fear' presents a new ideology based on recent research in psychological science and well-being on the benefits of fear when used constructively. Tamsin talks about her fearful experiences prior to and post her BRCA1 mutation discovery, and describes the ways in which fear has helped her endure her breast cancer journey with triumphs and courage. We are very proud of Tamsin and hope you enjoy reading her story. Naz and Vicky



http://www.huffingtonpost.co.uk/tamsin-sargeant/how-fear-saved-my-life_b_9592014.html

The other side of fear ~ Naz

Little did I know that the thought of writing about my fears and anxieties as they related to my breast cancer experience would make me apprehensive. After all, I was an academic specialising in the cognitive and neural underpinnings of emotional vulnerability. I had spent many years of my life studying the brain mechanisms of attention and cognitive flexibility in anxiety and depression, and had become interested in how we could target and influence those mechanisms to reduce the impact of anxiety and depression and boost resilience towards psychological well-being. As the idea elaborated, my fears exaggerated and the whirlpool of mixed emotions was what I experienced – they in fact felt very alive. ‘It will be liberating’ one of my friends said, and while I cherished the idea of that thought, the anxiety about how I would do justice to the description of the many roller coasters I experienced, their effects on my young daughter, on my work and to the person that I am now, concerned me. I broke the ice by putting pen to paper and relished the thoughts that raced through my head, the sensations that rushed through my body, and the tears that found their ways to the surface. Three years ago, at the time of my breast cancer diagnosis on the 2nd of January 2013, I would have never been able to see this day, me: alive, at work, vigilant, and eager to tell the story. And yes, in a strange way, it felt rather liberating.

Resilience has been defined as the process of adapting well in the face of adversity, trauma, tragedy, and injury. Resilient people are flexible and able to regulate their emotions as necessary. They are able to embrace their feelings and thoughts and not fight them. Emotions signal to us what is important, and as such should not be ignored. They are what makes us human, dynamic and insightful. Resilience is also dynamic and fluid and a much desirable thing to have when confronted with a breast cancer diagnosis. 

It is estimated that every 10 minutes a woman is diagnosed with breast cancer in the UK (Cancer Research UK, 2014). With medical advancements, a large proportion of sufferers live years beyond their diagnoses. However, the negative psychological impact of diagnosis and treatment on cognitive health, predicts the development of anxiety and depression in a significant proportion of women.  Diagnosis at a younger age is a risk factor for vulnerability, cognitive impairments and their consequent impact on career and responsibilities of a young family. Survivors face fear of recurrence, loss of fertility and early menopause due to medication, altered physical image due to major surgery, changes in sexuality and fear of mortality. Psychological interventions are sparse and the effectiveness of the existing treatments highly limited. Many women continue to doubt their abilities in the jobs they once used to hold and suffer enormous insecurities in the work place.

Every year 2.6 million women with a breast cancer diagnosis are told that they should be grateful for a second chance to survive. The experience of fear and hope are very much mixed for a patient diagnosed with breast cancer. She is fearful of the consequences of cancer diagnosis and treatment, but also hopeful that with appropriate treatment she can get better. ‘I have a treatment plan’, I thought. I was confident that I could cope well. Multiple major surgeries, extensive chemotherapy for four and a half months, and a long course of radiotherapy took just over a year to complete. The depression, the exhaustion, and the side effects of treatment were overwhelming. Chemotherapy had left me suppressed emotionally, physically in agonising pain, brain dead, fatigued and dissociated from the self I knew. I was hospitalised with Sepsis three times with heavy antibiotics and blood transfusion. If chemotherapy was killing the cancer cells, it was killing billions of good cells to achieve that aim. Ella, my daughter, who was only 3 at the time was my inspiration to fight, but what if I could not make it? what if I could not be there for her? How will she cope? I am everything to my daughter and she is everything to me. How do you explain the implications of breast cancer to a child who is 3 years of age? ‘Mummy you will get better’ she kept telling me with fear in her eyes. ‘Mummy, I had breast cancer too, but now I am better and my hair has grown back and my breast is not sore anymore’. As treatment continued I was hopeful that I would regain my life and my confidence. I will be able to think clearly, to get rid of the chemo brain and mental fog, the fatigue that crawled on every inch of my body, the emotional roller coasters. Little did I know that my journey would start only after my treatment had ended.

‘You are looking so amazing, Naz’, ‘you can now put that chapter of your life behind you and move forward’. ‘Move forward’ was all I heard from everyone. You have fought so well Naz, even managed to write articles during chemotherapy. You are a role model for everyone.’ Yet I felt at rock bottom with a mixture of fears, compassion for others, smiles and confidence. Alone in an ocean trying to find my way to the shore. The waves were high, they were scary, and kept pushing me back to the deep end, no matter how hard I fought. Perhaps I need to fight harder, I thought. Why am I depressed when I should be happy and grateful for a new life? Someone like me should know better. Who am I? Am I the same person, or a different one, a stronger person or a weaker one? Expectations for regaining what was lost were overwhelming. I wanted to scream as I wanted to many times during chemotherapy but couldn’t find my voice due to emotional numbness. I was looking at myself through a glass that could not be broken, I could not touch me, I did not know me, I did not know how to reach me.  Everyone knew me as a positive and optimistic person, always smiling and strong, full of opinions and vocal. But in a paradoxical way, the fear, the agony and the pain felt somehow to my strength, I could identify with them. They seemed to lessen when I listened to them and accepted them. They are part of me, but they are surely not me. I am a changing person.

What does it mean to survive? We live with the assumption of being immortal even when we know we will one day die. Yet the fear of our own mortality in a paradoxical way makes the battle for survivorship harder. Fear has the power to numb our feelings when we fight it, and it has the power to make us stronger when we embrace it. It can guide us when helpless. It signals what is important to us, and as such should not be ignored. How can we foster resilience in the shadow of cancer? To keep going amid the fears fuelling every breath, for our loved ones, despite knowing we will have to let go of what is no longer ours.

As time passed by, Ella began to understand more about breast cancer and she now writes stories about it, she is five years of age and a rising star. She has told us that she wants to be a teacher, so that she can teach doctors about cancer. I cherish my moments with her with great intensity, the emotions are overwhelming and exciting when I am with her, because I am aware that I am not guaranteed tomorrow. I somehow have to believe that she will be OK. As time passed by, I became determined to translate the neurocognitive interventions I was developing in anxiety and depression research to targeting emotional vulnerability and promoting resilience in breast cancer. Through our efforts we were successful in obtaining some funding to pursue research into building resilience in survivors of breast cancer. Jess Swainston, my PhD student, is pursuing this work under my supervision. The research prospects are exciting yet scary. I recall my oncologist saying: ‘Is it too close to home Naz?’ But that made me more determined. After long deliberations I decided to set up the Centre for Building Resilience in Breast Cancer where I founded the private and closed support group: Building Resilience in Breast Cancer. We grew from two members to over 290 members in just three months. Along the way, I met the two sisters I never had: Tamsin and Vicky, who run this educational support group with me. In addition to psychological support that our members provide for each other we engage in research led debates on advances in the psychological aspects of breast cancer research. I have spent a life-time in education but for me the wonderful ladies I have met through my breast cancer journey, as well as my the many thousands of students that I have taught and the numerous that I’ve supervised, have taught me far more than I have ever learned as a teacher, a student, and child. There is a silver lining in everything we experience.

I have high hopes for our centre to expand, flourish, and reach out to the thousands of ladies affected by this deceptive silent disease. And I am somehow confident that we will achieve this aim.