The Psychological Impact of Breast Cancer

A Psychologist's Insight as a Patient

Cordelia Galgut

• Publisher: CRC Press
• Year: 2021
• eBook ISBN:
  9781000466942
• Topic: Medicina
• Subtopic: Teoria, pratica e riferimenti medici

'It's rare to find a professional in the field of health care who understands the psychology of such a frightening experience and who has also been through it herself. Cordelia's book will ring true to every woman who has experienced breast cancer and will, I hope, offer insight to doctors and nurses.' - From the foreword by Jenni Murray OBE What is it like to experience breast cancer? This book presents rare and valuable insights into the impact of diagnosis, treatment and prognosis from a woman who has experienced breast cancer as both patient and as health professional. It informs and educates readers about the psychological realities of living with breast cancer, of treatments such as surgery and radiotherapy, and the impact of social and historical attitudes to the breast and breast cancer on a woman's experience of the disease. The conflicts Cordelia Galgut experienced between conventional wisdom and her own first-hand experience are explored vividly and reflectively. The Psychological Impact of Breast Cancer is vital reading for medical and mental health professionals and trainees working with breast cancer patients, and for those who are affected by or have an interest in the condition. 'The aim of this book, and the way forward, is to understand that we must all be more sensitive to the feelings of patients and to the suffering, uncertainty and sense of vulnerability that this disease imposes upon them.' - Dr Carmel Coulter in her Foreword 'This book has helped me understand the complexities that my patients present and has turned me into a better doctor. It has eased my way along the road that I now travel as a cancer survivor.' - Dr Cathy Roberts in her Foreword ]

CHAPTER 1

The history of attitudes to breast cancer

This chapter looks at how women’s experiences of breast cancer do not take place in a vacuum. Our reactions, our experiences and the reactions of those around us are influenced by the social context in which we live. They are also affected by more than 3000 years of documented history of the disease and by the way the breast is viewed within many cultures.

THE EFFECTS OF SOCIAL CONTEXT ON MY EXPERIENCE OF BREAST CANCER

Human nature seldom walks up to the word ‘cancer’

— Rudyard Kipling, poet and writer (1926)¹

During the last five years, I have come to realise how much social attitudes to cancer and breast cancer have significantly affected my experience of it. They seem to go a long way towards explaining the complexity of my emotional response to living with this disease, so it would be unrealistic to explore the effect of breast cancer on women without considering them here.

Cancer has always been feared, conjuring up images of people at death’s door. It has ‘enormous resonance in our culture, as a metaphor for something inexorable, evil and insidious’.² This legacy from times when it was invariably a death sentence makes it hard for us to redefine how we think and feel about cancer generally, despite recent improvements in survival rates and I am no exception.

Cancer and me

Growing up in England in the 1950s and 1960s, cancer was the disease I learnt to fear the most. This fear was fuelled by the fact that everyone I knew of with cancer had died. My fear was exacerbated by the fact that two of those people were my maternal grandparents: my grandmother died of bowel cancer when I was a baby and my grandfather died of lung cancer when I was about seven. As a small child I picked up my mother’s understandable fear of dying young of cancer as her own mother had. This fear of having inherited a predisposition to it was transmitted to me as I was growing up, attuned as I was to every projected emotion. My awareness of cancer as a killer was further reinforced when a grandmother figure died of breast cancer when I was about eight. I remember the shock of Nelly’s diagnosis. I also remember visiting her in hospital and soaking up a feeling of hopelessness from the adults around, though nobody talked about what was happening. It was clear from the outset that she was going to die and her death was a big lesson in the harsh reality of life, since she was the first person close to me who had died. From that moment on cancer loomed large as an incurable and insidious disease and I was always looking out for signs of it in others: the man next door’s deeply pitted leg, the strange marks on another neighbour’s face. About the time that Nelly died, I particularly remember a young family friend taking me into her gynaecologist father’s study to show me a picture in one of his textbooks. It was a horrifyingly putrid-looking breast, riddled with cancer. I reeled from shock at this image and had nightmares about it. All these years later I can still see it in my mind’s eye, though it no longer scares me as it did, not least because I now know that it is possible to survive breast cancer!

Other cancers terrified me too. As a teenager, a friend’s sister dying of liver cancer had a very profound effect on me. Talking to her about it was taboo and whatever I tried to say or do seemed inappropriate. Overall I just remember her illness and subsequent death, and feeling extremely upset for my friend and her family. I also remember thinking that my friend’s sister could have been me. I particularly recall imagining myself cancer-ridden, lying in bed visualising the cancer and encouragingly waging war on it!

Fairly soon after this, my aunt was diagnosed with advanced cervical cancer. This was an enormous shock and terrified and upset me, and her death was a huge event in my mid-teen life. A few years later my young cousin Fiona died of leukaemia. This was another massive shock and a terrible tragedy. She had come to stay with me a while before we knew she was so ill and I remember her asking me repeatedly why I thought her gums were bleeding. She had wanted to paint my flat and did so while I was at work even though she was incredibly tired. I suspected she was very ill but I hardly dared consider that she had cancer. That was too scary. I later chastised myself for not having put more pressure on her to go to the doctor, or taken her myself. As far as cancer was concerned, the final straw of my young life was when my beloved grandmother, the only grandparent I had ever really known, died of lung cancer when I was 22. That sealed cancer’s fate in my eyes – it was a killer which had taken my loved ones away.

FIGURE 1.1 Fiona and me in about 1964.

In my mid-twenties, I recall being convinced I was going to get breast cancer. I kept thinking I had a malignancy in my left breast, bizarrely almost exactly where one was found 25 years later. Had it been lying dormant for all those years, waiting for something to trigger it: a genetic time bomb or something similar? Or had I caused it by my own actions such as poking and prodding myself: the ‘did I bring it on myself?’ school of thought (see Chapter 2). As I got older, breast cancer was still top of my list of the worst cancers to have. I continued to think I was going to fall victim to it even though I suppressed that fear as much as I could, telling myself this was nonsense, that I was too young and that there was no breast cancer in my family. My fear of the disease was exacerbated by the fact that cancer was still not spoken about openly – in hushed tones if ever – especially not cancers of the ‘intimate parts’ and breast cancer was one of those. In fact no one in my social circle in the 1980s, from youngsters in their twenties and thirties to women in their sixties, had ever had access to a mammogram. And ‘The big C’ was definitely how we viewed cancer and breast cancer – as something to be feared – almost as though if you talked about it you would induce it. I had no role model of anyone who had survived cancer, let alone breast cancer, and the media seemed to depict all cancers as killers. Moreover, at that time cancer was seldom a curable disease so the fear and media portrayal of cancer had some justification.

THE CURRENT SITUATION

Silence like a cancer grows

— Paul Simon, singer/songwriter (1964)³

Sadly, years later despite recent advances, I get the impression that people are still as frightened of cancer as they were before. This is true even among young people, although it is talked about more now than it used to be, especially in the media. Since being diagnosed with breast cancer, and choosing to be open about it, people’s responses to me have often indicated that they cannot see beyond my cancer when they talk to me, much as people have responded when I have been open about my bi-sexuality. It’s not so much what they say that betrays their difficulty; it is rather the look of shock, fear or terror in their eyes and their very awkward body language. These responses can make comfortable interactions very difficult. Some would say ‘Well, just don’t be open, it’s easier that way’. And in some instances I think that is the better approach. However, generally I prefer to be as open as possible about things that some might consider to be personal and private matters because I believe that nothing will change for the better if we stay silent. The unspoken nature of these things and our fear of them will be reinforced if we do.

Though most of the women I have met with breast cancer have disclosed the fact that they have cancer privately, they often seem wary of doing so publicly. A culture of fear and silence prevails and the fact that women with breast cancer feel it necessary to consider whether to disclose or not speaks volumes in itself. The fears of being viewed differently from before, and differently from other women, are big factors: being labelled ‘that woman with breast cancer’ and having to face the fear oneself and see it on the faces of others. Also disclosure can feel like exposure – particularly mentioning a part of your body that is often considered private and connected in people’s minds with sexual attraction and sexual activity. The very mention of it can feel like an uncomfortable, over-intimate disclosure that may be both embarrassing and cause embarrassment. This all adds to the stress and strain of coping with a diagnosis of breast cancer. As Suky, whom I interviewed, said, ‘It was an intimate subject – I didn’t want it to be discussed at work, behind my back. I am a reserved and private person and being diagnosed with breast cancer threw me into a panic. I didn’t want anyone to know!’

THE ORIGIN OF THE FEAR OF CANCER

Cancer cannot be cured and will never be cured, but the world wants to be fooled that it might be

— Gui Patin, Dean of the Paris Medical Faculty (1665)⁴

Where does this fear and terror of cancer come from and why, at the beginning of the twenty-first century, does it continue to be the disease that many people fear the most; almost the disease that dare not speak its name? One answer might be that our view of cancer is affected by a complex mixture of received wisdom about it, ignorance, bad publicity, personal experience and a heavy legacy from the past. Generally we have not yet changed from thinking of cancer as always fatal to thinking of some cancers as potentially curable or manageable conditions if diagnosed early enough. However, as Deeley, a doctor writing about cancer in 1979, says, ‘attitudes lag behind medical advances’,⁵ so this is maybe not surprising.

The word ‘cancer’

Perhaps there is something about the word ‘cancer’ and the way it has embedded itself in our subconscious and unconscious thought patterns that accounts for our ongoing fears. For example, in Latin, ‘cancer’ or ‘canker’, the older spelling of the word, meant anything that erodes, rots or corrupts. As Deeley says:

We find it applied to a disease of trees in which the bark rots away, to a fetid affection of horses’ feet, to an ulcerating lesion in the throat of fowl, to a fly which eats away fruit, and to a worm that attacks plants; in syphilis, we use the word ‘chancre’ – again from the same source. It can be applied in a less precise way to human behaviour as in ‘their word will eat as doth a canker’ (2 Tim. 2.17). The word thus implies destruction, eating away, a spreading of evil or corruption.⁶

Therefore, it is perhaps understandable that we persist in using the word when talking about insidious, out of control and frightening things. The phrase ‘it’s a cancer in our society’ is often used. Indeed, the 2007 edition of the Shorter Oxford English Dictionary includes the powerful phrase ‘a dangerous cancer of hatred and racism in our society’.⁷ Its definition also includes ‘a malignant tumour or growth of body tissue that tends to spread and may recur if removed’.⁸ I do wonder whether that image which is so frightening – of a disease that always spreads uncontrollably and lethally – is in some sense at the heart of our ongoing fear of cancer. Certainly, in conversation, people often seem to have this view.

Indeed, many of us still adhere to the definition of cancer that can be found in the 1987 edition of the Shorter Oxford English Dictionary that defines cancer as ‘a malignant growth or tumour that tends to spread and reproduce itself; it corrodes the part concerned and generally ends in death’.⁹ However, this was over 20 years ago and much progress has been made in the field of cancer since then. In the UK more women now die from heart disease than cancer. ‘In 2007, over 100,000 women died from CVD in the UK – almost 24,000 more than died from cancer.’¹⁰ Yet it often seems to be less feared than cancer, perhaps because more young women die from cancer and breast cancer than heart disease. Indeed, no one would say, ‘It’s like a heart disease in our society’, when talking about something as nasty as racism. But then the derivation of the word ‘cancer’ has a much longer and more complex history. Perhaps this explains in part why ‘many women are unaware that coronary heart disease is their main killer, their biggest fear is breast cancer’.¹¹

THE ORIGIN OF THE FEAR OF BREAST CANCER

We must travel in the direction of our fear

— John Berryman, poet and author (1942)¹²

I can only scratch the surface of breast cancer’s long and convoluted history. And breast cancer is only one of many cancers, all of which have their own particular physical and psychological impact; all of them will be hard to bear in their own different ways. However, Leopold, a contemporary writer on cancer, makes some interesting and valid points w...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Foreword by Jenni Murray OBE
• Foreword by Dr Carmel Coulter
• Foreword by Dr Cathy Roberts
• Acknowledgements
• Illustrations
• Dedication
• Introduction
• 1 The history of attitudes to breast cancer
• 2 Diagnoses
• 3 Surgery
• 4 Radiotherapy
• 5 Life post the first-phase treatments
• 6 The long haul
• 7 Changes to self through breast cancer
• 8 Relationships since breast cancer
• 9 Working through breast cancer
• 10 Conclusion
• References
• Mastectomy, reconstruction and chemotherapy by Dr Sarah Burnett
• Glossary