11 October 2019
  • Breast Cancer Now launches bold new campaign ‘The Unsurvivors’ to challenge the perception that everyone survives the disease and call for improvements to support, treatment and care for those living with incurable breast cancer.
  • Largest ever UK survey of people living with incurable secondary breast cancer finds nearly one in four (24%) patients who saw their breast cancer return and spread after treatment had to visit their GP three or more times before eventual diagnosis
  • Miranda Ashitey, one of the women in the campaign, says: “I now feel like I’m living on borrowed time. I’m constantly aware, having seen it happen to other women, how quickly things can change once the drugs stop working. It’s devastating knowing that I’m never going to be the same age as my mum, that I’ll never draw a pension, nor will I watch my three beautiful nieces grow up.”

Leading research and care charity, Breast Cancer Now has today launched ‘The Unsurvivors’, a bold new campaign to call for urgent change for people living with incurable secondary breast cancer and challenge the perception that everyone now survives the disease.

The campaign comes as the charity publishes findings from the largest ever UK survey of those living with incurable secondary breast cancer (2,102 people), calling for greater recognition of the tens of thousands of people living with the disease in the UK and a step-change to ensure everyone receives a prompt diagnosis and the right support, treatment and care.1

While more UK women are surviving breast cancer than ever before thanks to cancers being detected earlier, a focus on faster diagnosis and decades of progress in research and care, around 11,500 still die in the UK each year.2

There are an estimated 35,000 people living with secondary breast cancer in the UK, where breast cancer spreads to another part of the body, such as the bones, liver, lungs, skin or brain.3 While the disease can be treated and controlled for some time to help patients live well for as long as possible, it remains incurable. If left untreated, secondary breast cancer continues to spread and symptoms are likely to worsen and have a greater impact on daily life.

‘The Unsurvivors’ campaign consists of striking imagery, featuring a diverse range of women diagnosed with secondary breast cancer to tackle the misconceptions about what the disease looks like and who it affects. It was developed in collaboration with creative agency Nice and Serious and a group of 29 women living with secondary breast cancer from across the UK.

A powerful 60-second video features 14 of these women seated and looking directly at the camera, challenging the audience to see them. The video shares a rallying cry for the changes women with the disease urgently need to help them live well while they can, asking for people to join and support them.

“Until we’re seen; Until we’re heard; Until we’re known; Until things change; Until early diagnosis; Until better treatment; Until more specialist nurses; We’ll be living life with secondary breast cancer; As best we can; Until we can’t; Until the end; Until we’re gone; Until we’re dead”

The campaign comes as a landmark survey by Breast Cancer Now found that nearly one in four (24%) respondents who had previously been treated for breast cancer had to visit their GP three or more times with symptoms before being diagnosed with the return and spread of the disease.

The research and care charity’s survey found that just 13% of respondents who had had a prior diagnosis of primary breast cancer said they had been given enough information about the potential signs and symptoms of the return and spread of the disease to be looking out for after their initial treatment.

In addition to the launch film, women will share their stories across blogs and conversational personal videos, and the charity will be holding a Facebook Live to highlight the experiences of people living with the disease.

Three women Nathalie (31), Miranda (36) and Laura (51) are among the 14 women who appear in powerful campaign imagery, being shared across social media.

Nathalie Wastie-Brett, 31 from Witney, was diagnosed with primary breast cancer in April 2012 at just 24 but, at the end of hospital treatment, found out it had already spread to her sternum. She said:

“I found a lump in my breast when I was 23 and at the start of my second year of university in 2010. However, when I got it checked out a specialist told me I was too young to get breast cancer and, unfortunately, I believed her. As a result, I wasn’t diagnosed until two years later, and the cancer had already spread.

“Being diagnosed with secondary breast cancer so young means I had barely any time to be an adult without cancer - my life had barely begun before I found out that it would be over far sooner than I ever would have thought. While this means I’ll never have a career or travel, for me the most heart-breaking part is that I’ll never have children. Cancer has robbed my husband, who was just 21 when I was diagnosed, and I the chance to have a family together.

“Our wedding in May 2017 was incredibly bittersweet as we knew it was one of the last big life milestones that we would do together and that, too soon, my husband will be a widower. This shouldn’t happen to anyone. I’m taking part in this campaign to represent people with secondary breast cancer and I want women, including younger women, to be taken seriously when they have breast health concerns.” 

Miranda Ashitey, 36 from London, was diagnosed with secondary breast cancer in February 2019, five years after her primary diagnosis, after being admitted to A&E with fluid in her heart and lungs. She said

“Being told I had secondary breast cancer five years after my primary diagnosis was shocking and totally unexpected. I’d had a persistent cough for two months, but I felt fine, until I suddenly deteriorated and was admitted to A&E with fluid in my heart and lungs. After a week in hospital I was told cancer cells had been found in the fluid, and that the cancer had spread to my lungs and liver and was incurable.

“I now feel like I’m living on borrowed time. I’m constantly aware, having seen it happen to other women, how quickly things can change once the drugs stop working. It’s devastating knowing that I’m never going to be the same age as my mum, that I’ll never draw a pension, nor will I watch my three beautiful nieces grow up.

“By taking part in this campaign, I want to break the perception that breast cancer is an easy cancer to have and educate others about the reality of living with incurable secondary breast cancer. People are dying from this disease, and more desperately needs to be done to help give people like me more time to live and live well.”

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, the research and care charity said:

“Once breast cancer has spread to another part of the body, it can no longer be cured. Those living with incurable secondary breast cancer face fear, anxiety and uncertainty every day. But they desperately want to live well while they can, sometimes for years, and have the best support possible to enjoy precious time with their loved ones.

“We talk a lot about the progress we have made in breast cancer over recent decades – but we cannot let this mask just how far we still have to go. Breast cancer is far from done, and with approximately 35,000 people living with incurable secondary breast cancer in the UK, we need to act now

“For over a decade, we’ve been calling for improvements to the diagnosis, treatment and care of secondary breast cancer, but change has been too slow. We have created ‘The Unsurvivors’ campaign to make those with the power to bring about change, sit up and take notice. For too long women living with secondary breast cancer have felt overlooked and forgotten, and we hope this campaign name highlights what so many feel is forgotten - that the disease still kills people on a heart-breaking scale. Around 11,500 people still die in the UK each year.

“We would like to thank the incredible women involved in our campaign who have so passionately shared their own personal experiences to show this reality of secondary breast cancer.

“We now need people to join us to take a stand together for women living with the disease and for those who may be diagnosed in the future. We need to see a step-change in the diagnosis, treatment and care of secondary breast cancer. There isn’t time to wait, things must change for the better now.”

Other results from Breast Cancer Now’s survey of 2,102 people living with secondary breast cancer include:

  • Four in ten (41%) respondents who had spoken to a healthcare professional before being diagnosed with secondary breast cancer said they felt that their symptoms had not been taken seriously.
  • Among respondents who had visited their GP having previously been treated for breast cancer, 20% were treated for another health condition by their GP before eventually being diagnosed with secondary breast cancer.

The charity’s campaign report sets out 11 key recommendations, including calling on:

  • The NHS in all UK nations to develop tools and resources to help GPs recognise cases of secondary breast cancer and to ensure all primary breast cancer patients are provided with information on the signs and symptoms of secondary breast cancer, at a time and in a manner that suits them, as part of their follow-up support after treatment.
  • All UK Governments to review and publish a breakdown of the current number of full-time equivalent Clinical Nurse Specialist posts to support people with secondary breast cancer, and to take urgent action to address the shortfall in specialist nurses, including providing the investment needed to recruit and train new nurses – to ensure everyone with secondary breast cancer is supported by a Clinical Nurse Specialist.
  • All UK Governments, the NHS, the pharmaceutical industry, the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to work together, alongside Breast Cancer Now, to ensure new treatments can reach secondary breast cancer patients quickly, at a price the NHS can afford.
  • NHS bodies across the UK to provide appropriate support for patients, clinicians and local systems to ensure everyone with secondary breast cancer has sufficient information about clinical trials.

Breast Cancer Now has launched ‘The Unsurvivors’ campaign to call for improvements to diagnosis, treatment and care for people with secondary breast cancer – Sign the petition

Watch ‘The Unsurvivors’ film

ENDS

For further information, high res images, or to arrange an interview, please contact the Breast Cancer Now press office on 020 7749 0897, 0345 092 0807 or at press@breastcancernow.org If out-of-hours, please contact 07436 107 914

Notes to Editors:

1 The survey of 2,102 people living with secondary breast cancer in the UK was undertaken by Quality Health between 21 June 2019 and 12 August 2019.

2. An estimated 11,500 deaths from breast cancer based on average mortality figures for each nation using 2015-17 data. Death registrations summary tables - England and Wales 2017. Office for National Statistics. Cancer statistics, breast cancer. Information Services Division, NHS National Services Scotland. Northern Ireland Registrar General Annual Report 2017 Cause of Death.

3. Yip, K., McConnell, H., Alonzi, R., & Maher, J. (2015). Using routinely collected data to stratify prostate cancer patients into phases of care in the United Kingdom: implications for resource allocation and the cancer survivorship programme. British Journal of Cancer, 112, 1594–1602

Find out more about incurable secondary breast cancer