My Breasts, My Cancer, My Story

My Breasts, My Cancer, My Story An exploration of the value of sharing stories of breast cancer October 2014

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Executive Summary In September 2014 The Estée Lauder Companies’ Breast Cancer Awareness Campaign UK (The BCA Campaign) commissioned a qualitative study exploring the role of storytelling in women’s experience of breast cancer.

The title of the research emerged from a YouGov survey 1 of 2,079 women in Great Britain. With breast cancer being the most common cancer in the UK with approximately 49,900 women and 350 men diagnosed in 2011 (Cancer Research UK, 2014), the study focused on capturing the individual perspectives of a representative group of women.

18 women, all of whom have received a diagnosis of breast cancer at some point in their lives, were recruited to a focus group/workshop day in Cardiff on the 15th September 2014.

Thematic analysis of the data revealed themes that both consolidated existing research and contributed additional, and more in-depth, insights.

When you’re telling your story you’re in control of exactly what information you share and how you’re going to share it, and that’s the power of the thing, isn’t it?

1 YouGov (2014) Breast Cancer survey commissioned by The Estée Lauder Companies’ Breast Cancer Awareness Campaign UK

Key findings The importance of creating an open dialogue and sharing a wide range of stories, both in the public sphere and within groups of women with a breast cancer diagnosis, is the strongest theme to emerge.

It is important that women tell their stories of breast cancer to dispel myths, publicise ‘ordinary’ 2 women’s experiences, share information and for reciprocal learning.

Women want to take ownership of their own experiences, stories and bodies through sharing ‘on their own terms’.

Some women are motivated to tell their stories to address a gap in information and support that they have experienced, others want to support women on a more emotional level.

Hearing other women’s stories and experiences can enable women to share their own. For some participants the barriers of cultural and linguistic differences sometimes made sharing their stories difficult. Any mechanisms for overcoming this are very important to particular groups of women with breast cancer.

Women want to hear ‘useful’ stories that contain practical, educational and emotional resources that they can use on their breast cancer journey. Specifically stories about: types of mastectomy, fertility and menopause for younger women, dating, spiritual and practical advice for women within close religious communities, dealing with medical professionals, employment law and rights, financial advice and dealing with emotional repercussions after treatment and during recovery.

People listen and respond in different ways to women’s stories of breast cancer; sometimes emotional, sometimes supportive and sometimes practical. On balance the women preferred the practical, unemotional response, which allowed them space to deal with their own emotions and not worry about others. Reactions from medical professionals varied between positive and negative but all agreed that sensitivity is required from professionals when dealing with women who have had a diagnosis.

2 The term ‘ordinary’ is used in this report to denote women who do not have celebrity status.

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Introduction In September 2014 The Estée Lauder Companies’ Breast Cancer Awareness Campaign UK (The BCA Campaign) commissioned storytelling consultancy Storyworks to carry out a qualitative study exploring the role of storytelling in women’s experience of breast cancer.

Some of the emerging themes from a YouGov survey 3 of 2,079 women in Great Britain were used to examine, in more depth, how and why sharing stories is important to women who have or have had breast cancer. This report includes information graphics that represent some key findings from the survey.

83% of women think talking helps people come to terms with breast cancer 3 YouGov (2014) Breast Cancer survey commissioned by The Estée Lauder Companies’ Breast Cancer Awareness Campaign UK

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Context Breast cancer is the most common cancer in the UK with approximately 49,900 women and 350 men diagnosed in 2011 (Cancer Research UK, 2014).

Female breast cancer rates have increased by 72% since the mid-1970s (ibid, 2014).

However, more women than ever are surviving breast cancer; approximately 8 in 10 today compared with only 5 in 10 during the 1970s (ibid, 2014). It is against this backdrop of an increase in both incidence and survival rates that this study was undertaken, in an effort to unpick and better understand the breast cancer experience of a diverse group of women living in the UK today.

Storytelling and breast cancer has been explored in a range of contexts including the internet (Høybye, Johansen & Tjørnhøj-Thomsen, 2005), law (Sahrf, 2001) and to highlight the value of communicating experiences and, more importantly, the detail of having breast cancer (Knopf-Newman, 2001). Greenhalgh (2008) has written about the value of storytelling used with evidence-based theory for medical professionals covering the importance of understanding and interpreting patient narrative.

This study fits within the wider field of research into the impact of breast cancer stories, whilst specifically A literature review using key search terms was carried exploring existing knowledge with a group of women out prior to the study to from a range of diverse locate the survey findings backgrounds and across within their wider research generations. context. The review focused specifically on the forms, timing and impact of women See Appendix 1 for a bibliography. communicating the story of their diagnosis.

70% of British women either have / have had or know someone who has / has had breast cancer Statistics from YouGov (2014) Breast Cancer survey

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Methodology The approach was to bring together a group of women for one day, to explore the experience of sharing first hand experiences of breast cancer.

Recruitment involved contacting approximately 60 groups and affiliated organisations to inform women of the study. The groups were chosen to represent women from a wide range of backgrounds, ethnicities, religions and cultures. Involvement was voluntary and recruitment was incentivised with a voucher and expense payment.

The session ran in Cardiff on the 15th September 2014 from 9am to 4pm and 18 women took part, ranging in age from 34 to 75; each with a diagnosis received at some point between 2014 and 1994.

The day was designed using a mix of methodological approaches combining workshop style exercises and traditional focus group discussion, to address a set of questions developed using some of the themes that had emerged from the YouGov survey. The structure of activities had a focus on narrative expression, in line with theme of storytelling that was being explored.

This pattern was repeated in the second half of the day. A visual recording method in the form of wall art depicting key quotes and images from the group in real time was used. Finally participants were asked to draw their own timeline from ‘diagnosis’ to ‘today’, mapping the people to whom they had told their story and commenting upon each experience of telling.

Firstly, participants were asked to exchange stories in pairs to clarify the definition of storytelling and to reflect on telling, re-telling and hearing their own stories and the stories of others.

This methodology allowed a mix of small group, large group and individual expression to gather as many insights as possible in response to the questions outlined here:

Participants then discussed this experience in small groups before moving into one large group to respond to new themes.

1. How did it feel telling the story of your cancer diagnosis to someone you don’t know?

9. What is the most positive experience of telling someone (drawn on your timeline)?

2. How did hearing your story told back to you make you feel?

10. What is the most difficult experience of telling someone (drawn on your timeline?)

3. How did telling someone else’s story make you feel?

11. What difference, if any, is there for you in 4. Are you more likely to be sharing your breast cancer moved and / or inspired by experience with women a celebrity or an ‘ordinary’ and men? person’s breast cancer story? (you can draw on past experience or answer There was a structured approach to data collection: hypothetically) 5. Have you shared your story publicly (beyond family and friends)?

1. Discussion in three small groups (questions 1, 2, 3, 9 and 10);

6. If yes, what led you to share your story publicly?

2. Full group discussion (questions 4, 5, 6, 7, 8 and 11);

7. If yes, what was the impact on you of sharing your story publicly?

8. If no, did anything in particular stop you wanting to share your story publicly?

Examples of the day’s visual recording

3. Individual work to develop a timeline; 4. Qualitative in-depth interviews with six women in private.

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Women inspired or influenced by the stories of others were driven to act

41% of women went on to check their own breasts more regularly. This figure grew to 50% among 18-24 year olds

One in 10 (11%) researched their own personal risk of breast cancer

Over a quarter (27%) went on to get involved with or donate to a breast cancer charity

42% said the stories of others had taught them to value life more and live for the day

Statistics from YouGov (2014) Breast Cancer survey

Findings The whole session had been recorded and the audio was transcribed. Data analysis was then carried out in two stages: firstly the study team worked together over the course of a day to draw out key themes and, secondly, categorization of the data was done to consolidate and develop these original themes.

Thematic analysis of the data revealed a number of interrelating issues and overlapping themes.

Some consolidated the YouGov survey findings and issues arising in the literature review and others contributed additional and more in-depth insight to the existing research.

The findings centered around five broad questions:

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1. Why is it important that women with a diagnosis of breast cancer tell their stories?

For most participants telling their story was seen as a way to dispel myths surrounding breast cancer. This meant specifically the importance of themselves, and other ordinary 4 women, telling their stories to convey the details of breast cancer and the reality of diagnosis, treatment and recovery in the public sphere. Stories with details, facts and honest expression about diagnosis, surgery and treatment were seen as an important way of enhancing personal and public understanding of breast cancer, the misconception of which was described by one participant as ‘dangerous’.

The often ‘glossy’ 5 portrayal of breast cancer in the media was widely discussed and provoked strong views and emotions:

“..it’s much harder to be a normal person trying to keep a job down, having small children, every… story in this room actually, I’m sure emotionally is difficult …if I had £40million in the bank it would take the edge off a bit” Participant 10, age 45 Celebrity stories were discussed at some length and there was a consensus that it was often (but not always) the case that the celebrity in question was seen to recover and return to her former glamorous self, whilst the grim day-to-day reality of treatment and recovery was hidden as the woman retreated from public view until she had recovered.

However, there was also recognition that celebrity stories can be very valuable in raising awareness and highlighting issues, and several participants cited instances of particular celebrity stories being very helpful:

“It’s not glamorous is it? Which is how it’s portrayed through celebrities I think.”

Participant 1, age 52

“… 20 years ago it was called ‘The Big C’ and 40 years ago it wasn’t discussed at all, so at least those celebrities are coming out and saying “I’ve got cancer, I’ve had cancer”, it’s a word that can now be used without people whispering or afraid they’re gonna catch it from you.”

Participant 16, age 38

It’s the story that counts, not who tells it:

55% of women believe celebrity and real life stories about breast cancer are equally influential

It is clear that many women consider it important to tell their stories in order to help others going through a similar experience. Participants, and particularly those who had been diagnosed over two years before, felt that telling their story was an important way of helping women in the future by giving an honest account of their own experience: ‘“.. my consultant asked me to speak to her medical students, final year, and it was because in my time when I had my mastectomy I had a confrontation with … registrar and (laughs) I dealt with it but I was angry …. and, I’ll tell you what, I felt that was really good that I could tell these very young, lovely young students, but I wanted them to really realise…what they were dealing with.”

Participant 2, age 75 For some it is important to tell stories in order to take ownership of their own experiences. Sharing stories can help to unpick, understand and unravel the events and feelings following diagnosis and allow the woman to begin to come to terms with what has happened and continues to happen to her as she goes through months and probably years of her breast cancer experience.

Only 3% of British women believe celebrity stories about breast cancer are more inspiring than real life Statistics from YouGov (2014) Breast Cancer survey

“…when you tell people it’s got to be what you want them to know and on your terms.”

Participant 16, age 38

Finally, telling other women who have been through a similar experience can result in unexpected practical and emotional support:

The notion of wanting control and power over one’s own story was a strong theme throughout the whole day. Women talked of feeling the need to be able to share their story in their own way, rather than being seen as a set of medical case notes:

“…she actually brought in food for me, you know, Indian food, and she was a radiographer at the same hospital I work for. … And at home people were just so worried and devastated because we’ve never had a patient with something as tragic as cancer in the family… So… these people who came into my life, I don’t know where they came from but it just… it’s just changed my outlook into the world and I always thought strangers didn’t want to know me, nobody did, and yet it’s like angels coming from somewhere, … it’s really opened my eyes.”

Participant 8, age 51

“... I think the other thing is when you’re telling your story you’re in control of exactly what information you share and how you’re going to share, and that’s the power of the thing, isn’t it?”

Participant 13, age 54 As well as telling stories orally, participants saw the value in sharing their body’s physical story too. One participant volunteers at a local lingerie department, helping women who have had breast cancer to choose new bras, often demonstrating using herself (post mastectomy) as a model:

4 Term used in this report to denote women who do not have any celebrity status 5 Term used by more than one of the participants

“…it’s to help people go forward… they’ve had diagnosis, they’ve probably had some treatment, they might still be undergoing treatment and if you see when the people come in, they sit down and they’re often quite shoulders up and… within a couple of minutes...their shoulders are down and they’re relaxed…you see the difference that you can make is just unbelievably wonderful.”

Participant 15, age 67

Because that information wasn’t there for me, I wanted to make sure that information is there for someone else

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2. What motivates women with a diagnosis of breast cancer to tell their own stories?

The main reason that women share their stories beyond their immediate friends and family is to help other women. This came through strongly as a key motivation for many participants who chose to share their experiences through various channels including: lingerie evenings; social media updates; performance; radio; newspapers; talks for medical students; published poems; plays and talks for religious groups Many participants had experienced a lack of specific and detailed information following diagnosis, a common motivation for sharing stories with other women who may be experiencing the same problems: “… one girl used to run an outdoor school and no one had explained to her that “You’re not going have any immunity, you’re going to want to stay away from all children,” and no one had explained that to her and that’s her job, and she was quite shocked and I was shocked that no one had pointed that out to her.”

Participant 14, age 35

The experiences and information that women want to share as part of their story often depend on their own personal set of circumstances.

For example, some participants have shared their story as a reaction to their own lack of access to practical advice for younger women with a cancer diagnosis: “As a younger woman I needed info on fertility options, side effects, going back to work issues, Equality Act 2010 information, financial help, body image problems, sex, dating and getting naked again – not early retirement or menopause. So I set up a blog and used Twitter to advertise it.”

Participant 11, age 34 Being part of a particular religious or cultural group motivated some to tell their story to women who shared the same background. More than one participant talked about the specific problems faced by women in a Hindu community. These included spiritual and religious issues, social issues (such as an unwillingness to disclose or discuss a woman’s diagnosis) and practical issues such as whether or not to eat spicy food during chemotherapy: “…Hindus I think… they like to keep it hidden… karma and superstition and… you know people don’t often talk openly in Hinduism because they think they will be judged if you have cancer… I don’t know about the younger generation but the older generation…”

Participant 9, age 65

“…it’s a taboo, to have cancer… it’s like you’ve got leprosy. This is what the Indian culture think of cancers so they won’t speak to you… they’ll tell their husbands and their in-laws because they have to, a woman has to tell their in-laws and maybe their parents but they won’t spread the word because in our culture they feel that when it comes, when the time comes to get our children married they would hold it against you…”

Participant 8, age 51 The importance of cancer support groups specifically for women from a particular religious, ethnic or cultural background was highlighted by several participants: “...because we have extended families and, you know, our food and stuff like that… we might exchange…what we should not eat, like hot spices and things like that. So in that sense, you know, that sharing was helpful, you know, in the group.”

Participant 7, age 53 It was clear from what these women were saying that they were not aware of any stories in the public sphere that resonated with their particular experience of breast cancer. They were not hearing media stories from women from their communities and they felt a need to share their experiences to help others and begin to open up these conversations.

Combating isolation and loneliness through relating experiences to women who have been through the same thing was also a key motivator and was linked closely with the value of support groups: “…you know that you are not the only one. You are not alone. So it’s much easier to talk to people with breast cancer because people without…. don’t know what it is…They just think they’re going to catch it…”

Participant 5, age 50 Other participants were motivated to share as a way of inciting positive action from others: “I think it takes one person just to put it out there but it’s the people that follow behind them that really make a difference, so I just hope that I can inspire others maybe to come forward and share their stories and then it’ll be more and more over time.”

Participant 11, age 34

40% of women have been inspired or influenced by someone sharing their experience of breast cancer

Statistic from YouGov (2014) Breast Cancer survey

This woman points to the need to hear ‘more and more’ stories from as many women as possible.

This was a very strong recurrent theme throughout the day.

If it wasn’t for the Breast Screening Programme I wouldn’t be here, and I think that’s really important to tell people and for people to listen

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3. What stories do women with a diagnosis of breast cancer want to hear?

Participants expressed a clear desire to hear stories that include useful, practical and educational information and facts that they can use on their breast cancer journey. Specifically they wanted to hear more stories about types of mastectomy, fertility and menopause for younger women, dating for younger women, spiritual and practical advice for women within close religious communities, dealing with medical professionals, employment law and rights, financial advice and dealing with emotional repercussions after treatment and during recovering when: “…they think you’re gonna be fine and dandy and ready to rule the world…”

Participant 11, age 34

Several women talked of how the stories they see and hear in the media are usually positive and uplifting and don’t reflect the tough reality of breast cancer. Women newly diagnosed do want to hear positive stories to encourage them and give them hope, but they also want to hear stories that describe the reality of what they are likely to face in the coming months and years. Learning was a strong theme and most women wanted to hear from other women who had gone through the same thing and could inform them as to what they might expect. Hearing stories from as many different women as possible emerged strongly as a key message. Celebrity stories have a role to play, but finding a public platform for a range of stories from ordinary 6 women is vital: “No two cancer patients are the same, but there are certain parts of their journey that will inspire and help other people, whether that be how to deal with your diagnosis or who to speak to in your area or what were side effects.”

Participant 11, age 34

No two cancer patients are the same, but there are certain parts of their journey that will inspire and help other people 6 The term ‘ordinary’ is used in this report to denote a woman who does not have celebrity status

Social media was an important forum for some participants and one woman in particular has developed a strong following on Twitter; a clear indication that she is sharing stories that many other women want to hear. This participant talked of the responses she had received to her blog: “…I think one of my most read pages on my blog is to do with the god damn constipation during chemo and there’s this whole joke in there about keeping a teaspoon [by] your bath just in case. It’s the most gross thing ever, but the amount of women who come up to me and say, “I read your blog, that thing about the constipation. I know exactly where you’re coming from”, and you know… you don’t read that in the cancer book.”

Participant 11, age 34 Many talked about the physical grimness of surgery, chemotherapy and radiotherapy as well as the emotional trauma they experienced throughout their treatment and beyond. Hair loss was a major emotional hurdle for many, as was the adjustment they had to make to a life of uncertainty.

However optimistic the prognosis, the shadow of recurrence was never far away. A desire to hear these complex, uncomfortable and ‘real’ breast cancer stories was put forward by more than one participant: “…how women communicate those stories about their bodies has been about being either a hero or a victim and it’s a tragic tale or it’s a heroic tale: “I got better and I climbed Mount Kilimanjaro” or “I died.”… how do we make those stories more nuanced, how do we think about the things that are more prosaic and aren’t the big dramatic moments?”

Participant 12, age 38

Nearly half of British women (45%) would tell their spouse or partner about finding a lump before their doctor

The overriding message from the group was that breast cancer stories are not neat and linear; they are messy, complex, emotional, sometimes funny, and often hard to share and hear. But we all need to hear them.

6 Term used in this report to denote women who do not have any celebrity status

Statistic from YouGov (2014) Breast Cancer survey

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4. How do people listen and respond to women’s stories of breast cancer?

Throughout the session there were many stories shared that told of difficulties women had experienced when telling people of their breast cancer. Stories included complex reactions from colleagues and loved ones, and a wide range of responses from health professionals.

The stories told varied depending, to some degree, on the amount of time that had passed since diagnosis and the stage the woman was at with regard to diagnosis, treatment and recovery. However, for most women, telling and retelling their own story was seen as both a positive tool for reciprocal learning or empathy and a difficult emotional hurdle that involves managing the effect of the news on others:

The biggest reason that would prevent British women from telling anyone about their diagnosis is not wanting to upset them (39%)

“…actually one of the hardest things I found was dealing with other people’s emotions because…

Some people were better than others in terms of hiding it or what have you but… you know and you end, you end up trying to make them feel better, “I’ll be alright, I’ll be fine.”’

Participant 10, age 45 Protecting people, and particularly children, emerged as a strong theme.

Telling children about a breast cancer diagnosis was generally seen as a negative experience with varying, often unexpected, reactions: “I felt that I had to protect, particularly my children, from all the gossip that was going around.”

Participant 16, age 38 “[telling my children about diagnosis was] the most difficult thing I have ever done. They have been brave and wonderful.”

Participant 16, age 38

When asked who they would find it hardest to tell, 38% of women said it would be hardest to tell their children

The timeline exercise revealed a number of different reactions from family, friends and medical professionals ranging from very positive to very negative. Many felt indifferent about telling certain people, for example medical professionals.

Telling ‘new friends’, colleagues and associates was, on the whole, a negative experience. For some, telling anyone close was difficult because of having to deal with other people’s emotions on top of their own.

Telling close family and friends was often not a choice but something the women felt they had to do, and do in a way that protected the feelings of others. There is a sense of a loss of ownership of their own story, as they feel obliged to re-frame it in order to take account of how it will be received by the listener: “One of my lowest points I think was my mum because…. my mum’s been the emotional one for me. But I kept having to remind her it’s mine… it’s my cancer, not yours.”

Participant 11, age 34

When telling others about a breast cancer diagnosis, the 56% of women would value practical support; only 17% would value sympathy Statistics from YouGov (2014) Breast Cancer survey

Being able to tell their story in a closed group of women who had all experienced breast cancer was seen by many to be liberating.

Most participants found it easier to tell their story to strangers, and particularly other women with a breast cancer diagnosis, than to close family or friends:

“I came out of hospital, phoned up work the next day and said “I’ve just had a breast cancer operation” and he said “Oh….shall I terminate your contract…?”. They’re not allowed to do it for a start but I didn’t know that. And that was it. I’d worked for them for nearly 15 years.”

Participant 15, age 67

“Do you think as well because we’ve all had that breast cancer experience, that when you’re listening to someone’s story you’ve got this wealth of knowledge in the back of your mind which makes a difference?”

Participant 15, age 67

On the whole participants preferred to talk to other women rather than men for the following reasons: a feeling that men don’t want to know about the details of breast cancer; it being ‘easier’ to talk to a woman; a perception that men are not good on issues to do with body image; some men view the breast as a sexy thing and breast cancer is not sexy:

“I found it much easier to tell people I didn’t know as it’s quite a blunt thing, just tell them and they can deal with it however they want; it’s much harder when it’s family and all that invested emotion…”

Participant 14, age 35 Some participants found it difficult to tell colleagues and line-managers in the workplace and, for more than one, this resulted in unwanted reactions including dismissal, claims of unprofessionalism and unwanted broadcasting of the news within the workplace:

“…they don’t have, you know, normally don’t have breasts, so how are they ever going to understand what it’s like to have none or one…?”

Participant 10, age 45 However, some participants counterbalanced these views with stories of male family members and friends who had been supportive.

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In addition, all agreed on the importance of educating children and young men on the realities of breast cancer, and being open about the physical side of mastectomies and chemotherapy, as a way of changing what was generally perceived by the group as a poor understanding of breast cancer by most men. This raised an important point with regard to the importance of stories of the reality of breast cancer being heard by men as well as women.

Participants related many positive reactions from recipients of their stories and these included: practical support, sharing information, unemotional, acceptance of the situation, proactive support. There was much to learn from the group with regard to how family members, friends and strangers can help the breast cancer patient best by listening and responding to their story in these ways.

On balance the more time that lapsed between the end of treatment and the telling of their story of diagnosis, the more women’s motives for re-telling moved away from an inward focus on themselves towards an outward focus on helping others.

I feel I need to protect the person who’s listening

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5. What enables women to share their stories of breast cancer more easily?

Hearing other women’s stories and experiences can enable women to share their own. For participants who did not immediately want to share their story, having others around them who had been through similar experiences, and were happy to talk about them, allowed them to open up.

Feedback at the end of the session pointed unanimously to the positive benefits the women had gained from spending a day with a group of women, most of whom they had not previously known, but with whom they shared such a deep common bond.

This experience echoed strongly with the stories many told of how the support groups they attended had been so beneficial. These groups were seen as good enablers for women to share their stories because of their welcoming and friendly nature: “… the support group that I attended… I felt that was one of the best things that happened to me. And I think my life was actually turned around because, although it was only the three ladies who opened it, I got a lot of feedback, a lot of support from them, I felt quite open.”

Participant 7, age 53 They were seen as hugely important and positive in providing a forum for reciprocal storytelling and information exchange. This was from the perspective of women who receive and give support through groups. This corresponds with the survey finding that ‘talking leads to positive action’:

I initially didn’t tell anybody that I didn’t know, it was very much something that I wanted to keep to myself, but now that I’ve had all my treatment I’m really happy to share my story and talk to other people about it

“…we try and meet people before they’re going into treatment and get them to join our group and then sitting with people so that they know what to expect, and we all get our boobs out and show everything. I think my boobs have been seen by just about everybody! [Laughter] And it makes such a difference and … they go into hospital feeling far more positive and that’s what our group’s all about.”

Participant 6, age 60 “I’ve got my cancer family.”

Participant 5, age 50 (talking about her support group) For some participants the barriers of cultural and linguistic differences sometimes made sharing their stories difficult. Any mechanisms for overcoming this are very important to particular groups of women with breast cancer:

“…with the older people so they can’t share their story with the people who speak English so they want…

Like with their own language, if someone speak in own language they can talk nicely. So that’s why this Asian women cancer group we all… Like maybe some of them don’t understand our language, Gujarati, so someone come there for Hindi language, when they are there we can talk in Hindi because Hindi language everybody understands.”

Participant 9, age 65 Throughout the session, participants expressed the importance of creating an open, honest, dialogue both in the public sphere and more intimately within groups of women with a breast cancer diagnosis. There was a general agreement that we all need to hear more diverse stories of women’s experience of breast cancer in order that more women will be better prepared in the event of a diagnosis and society as a whole will understand more fully the complexity of this disease and its impact on women’s lives.

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35% of people think that it would be easier to write about their feelings and experiences regarding breast cancer than to express them verbally Statistic from YouGov (2014) Breast Cancer survey

It was easier to write it down in a blog and direct people there and they would get a notification if I updated it.

Brilliant. But I found it very cathartic as well, in the fact I was putting it down, not getting interrupted and being able to put it in my own words, because I was fed up with people trying to finish my sentences.

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10 of the 18 women in the focus group had shared their story publicly

Had mastectomy filmed for documentary

Became an advice line for friends of friends

Tweeted

Appeared on a radio show

Made performances and plays

Put on a lingerie fashion show for women after surgery

Wrote a blog

Gave a talk at their temple

Gave a talk to medical students

Had poems and stories published

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Concluding Remarks Sharing personal stories of breast cancer is a complex process and each story will be different. A woman’s story changes as she moves through her cancer experience from symptoms (if she has any) to diagnosis, then treatment (including all that this entails) and hopefully recovery.

But the story doesn’t end there. For many women involved in this study the story has no ending as the fear that the cancer will come back one day never leaves their thoughts.

All the women involved believe in the power of stories and storytelling and its twofold benefits: the benefit to the teller and to the listener.

Whether the listener is another woman with breast cancer, a woman who might one day receive a diagnosis of breast cancer, or a man who may one day care for a woman with breast cancer, the message from this study is clear: we need to hear these stories.

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Appendix 1: References Ashing-Giwa, K.T. et al (2006) ‘Understanding the Breast Cancer Experience of Women: A Qualitative Study of African American, Asian American, Latin and Caucasian Cancer Survivors’.

In Psycho-Oncology 13, 6. 408–428.

Accessed www.ncbi.nlm.nih.gov/pmc/ articles/PMC1618782/ Ashing-Giwa, K.T. et al (2008) ‘Understanding the Breast Cancer Experience of Latina Women’.

In Journal of Psychosocial Oncology 24, 3. 19-52. Accessed www.tandfonline.com/doi/abs/10.1300/ j077v24n03_02#.VAgk67twaUk Cancer Research UK (2014) ‘Breast Cancer Key Facts’.

Accessed 26.08.14 at http:// publications.cancerresearchuk.org/ downloads/Product/CS_KF_BREAST. pdf Culver, J. L. Patricia L.A., Antoni, M.H. & Carver, C.S. (2002) ‘Coping and Distress Among Women Under Treatment For Early Stage Breast Cancer: Comparing African Americans, Hispanics and non-Hispanic Whites’.

In Psycho-Oncology 11, 6. 495–504 Geeta Patel (2014) http://www.breastcancercampaign. org/blog/the-breast-cancerexperiences-of-black-and-minorityethnic-women-by-dr-geeta-patel Greenhalgh, T. (2008) What Seems to be the Trouble? Stories in Illness and Healthcare.

The Nuffield Trust, Oxon Henderson, D.P. Gore, S.V., Davis, B.L. & Condon, H.E. (2007) ‘African American Women Coping With Breast Cancer: A Qualitative Analysis’.

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Acknowledgements The team at Storyworks would like to thank the 18 women who gave up a day of their time to share their stories so generously and also the many other women who wanted to take part but were unable to on this occasion.

Karen Lewis Lisa Heledd Jones Dr Sioned Pearce, Tenovus

This study was commissioned by the EstÊe Lauder Companies’ Breast Cancer Awareness Campaign UK (The BCA Campaign).

The campaign was founded by Evelyn H. Lauder in 1992. It supports education and medical research through the Breast Cancer Research Foundation (BCRF), an independent, not-for-profit organisation committed to funding breast cancer research worldwide that will help lead to prevention and a cure. The BCA Campaign raises funds and brings public awareness to the importance of early detection, encouraging dialogue between individuals and their health professionals about important matters associated with breast health.

All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2,079 women. Fieldwork was undertaken between 5th - 8th August 2014. The survey was carried out online. The figures have been weighted and are representative of all GB women (aged 18+).

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