After getting her second breast cancer diagnosis in 2020, Joanna produced a documentary and art installation about her breast cancer experience. She tells us about her two-time diagnosis, the discovery of a hereditary altered gene, and everything she wants to achieve with her project, Goodbye Breasts!
Tell us a bit about you and your breast cancer story
I’m a filmmaker and a Professor of Filmmaking at the University of Sussex. I am married with a 16 year old son and my family often works with me on my art and film projects.
My mum had breast cancer, and my sister was diagnosed at 47. So when I turned 47 in 2017, I asked my doctor to have a mammogram. At that mammogram, they found a lump. It was a huge shock, and I went through a lumpectomy and radiotherapy and was then on tamoxifen. They caught it early, and I was lucky.
I wasn't eligible for genetic testing after my first diagnosis, because my sister had already had one and nothing was found. But because of my diagnosis, my sister had her DNA retested and found out she had the newly discovered gene alteration PALB2. Because of this, I was tested and found out I carry the gene too. This had many implications for all of us. Women with an altered PALB2 gene have a 44% to 63% risk of breast cancer, and we could pass it on to our children.
My mum was also tested but even though she'd had breast cancer it came back negative. This meant the gene came from my father.
In 2020, when I was 50 years old, I considered a risk-reducing mastectomy and visited Guy's Hospital to discuss it, but I was unsure. Soon after, I found another lump. This made things clearer. I decided to have a double mastectomy. I had an immediate reconstruction using tissue from my thighs, chemotherapy, Herceptin, Zometa, Letrozole and I also had my ovaries removed to further reduce my risk.
What’s your project, Goodbye Breasts!, about?
It's about saying goodbye to my breasts, my recovery and opening up conversation around breasts and breast cancer. For this project I've made a documentary and an art installation about my journey. The documentary features my video diaries documenting my journey and treatment that I started filming after my second biopsy. I have conversations with women from a support group and learn about their experiences. And I explore the impact it’s had on my family and visit them in Australia.
I also do some quirky things like my art installation. I make a giant inflatable breast that I’ve suitably named, The Big Breast. And I created a song and dance based on post-operative mastectomy exercises. I filmed it as a music video with young women from a local Brighton dance group. It was a lot of fun!
At the end, we throw a Goodbye Breasts! Party which brings together all the people involved in the project.
What motivated you to film the Goodbye Breasts! documentary?
Because I had already had breast cancer once, the second time was quite different. There’s a different kind of awareness. While I waited for the diagnosis the second time I started filming. So in some ways, that’s what set me on the path. I tried to find some creative energy from this terrible situation that was happening to me and my family. It also gave me a focus and allowed me to take back some control when everything else was out of my control.
The first time I kept it very private and didn’t want to talk about it, but this time I felt I had to talk about it. I was meeting so many people affected by breast cancer and it seemed there was a silence around it, particularly around mastectomies. People seemed afraid to ask about it. It’s difficult to talk about, but that doesn’t mean we shouldn’t try. I wanted to talk about mastectomies and help others to talk about it, to open a positive, non-clinical space for these kinds of conversations.
What’s next in the Goodbye Breasts! project?
I’m holding an exhibition in Brighton on 24 -28 October 2023 of The Big Breast. It’s an inflatable breast measuring 9 metres wide and 5 metres high. You can enter inside it where the breast anatomy has been playfully reimagined creating a colourful wonderland. You can also hear people’s breast cancer stories on headphones and in short films. Alongside the exhibition are a series of talks, workshops and events.
I wanted to create conversations about breast cancer, particularly around mastectomies and its effects on a woman’s life. I also wanted to highlight altered genes and their impacts on those who carry them and their families. Mainly, I wanted to celebrate breasts and how amazing they are, even if they can cause us so much trouble.
What’s the key message you want women to take away from your project?
The first is the importance of allowing women to share their experiences about these difficult subjects. We need to listen and empathise, ask good questions and not be embarrassed, because that makes the person with breast cancer feel ashamed of their experience and that’s not right or helpful. I hope The Big Breast can be a positive and welcoming place for conversations about mastectomy and people can talk more widely about breast health.
The second is that it's okay to mourn your breasts, even if they caused you a lot of trouble. They were part of you, a part of your life, your history, your self-image, and it's important to recognise all that to let them go and move on. You might get new breasts or choose not to, but nothing replaces what you've lost, which is difficult to deal with but necessary for recovery. I think finding ways to incorporate this loss is important to heal.
My project is about recovery through saying goodbye. By making The Big Breast, I want to show how big an issue breasts can be whoever you are, whatever your experiences. But I also want to celebrate breasts as these amazing parts of our body, unlike anything else, that are unique, wonderous and beautiful, from the inside and the outside.
What impact do you feel Goodbye Breasts! has had so far?
On the women participating it has given them a chance to revisit what has happened to them and to share and reflect upon it. The feedback was overwhelmingly positive, even if it was difficult at times. I think the young women who participated in devising the dance, they became more familiar with their breasts and how to talk about them more openly. For the people visiting The Big Breast, they learn about breast anatomy through a playful and welcoming installation and listen to stories of resilience and joy and of sadness and loss. We hope the project will bring people who might not have otherwise into the conversation.
For me, it has helped me to transform what has happened to me into something positive. It has brought me close to my family, and I have met so many wonderful people and made new, lasting friendships.
The impact of the project is so great because of the support we had to create it. We had support from the University of Sussex, Heraclitus Pictures, Macmillan and Chalk Cliff Trust, and many others who have provided time, contributions, and support.
Do you have any personal messages or advice for women who’ve had breast cancer?
Don’t be afraid to talk about it – including all the details, because they are facts and there is nothing to be ashamed of. I think everyone has a different way of dealing with this, and it's important to find a way that works for you. I needed a way to own and filter it through me. It’s not that I have gotten rid of it and will never think about it again, but more that it has become part of me.