Moments That Count is a disease awareness campaign initiated, created, developed and fully funded by Novartis Pharmaceuticals UK Ltd. This article was created and funded by Novartis.
Patients living with incurable advanced breast cancer are the focus of a campaign to bust myths about what it’s like to live with a terminal diagnosis of the disease.
Just over one in five people diagnosed with breast cancer will experience a recurrence of it¹, and around 61,000 people in the UK – mostly women – are estimated to be living with advanced disease where the cancer has spread to other parts of the body², most commonly the bones, lungs, liver and brain.
When cancer comes back and has spread to distant parts of the body, it is usually considered terminal. In these cases, only about 27% of patients live beyond five years³.
The Moments that Count campaign aims to shine a spotlight on the experiences of advanced breast cancer patients and the issues they face, including low numbers of dedicated specialist nurses and a scarcity of mental health support.
A recent YouGov survey has shown 40 per cent of adults in the UK have never heard of advanced breast cancer⁴, and 36 per cent of UK adults don’t know what any of the signs and symptoms are, despite it being the leading cause of death for UK women between the ages of 40-59.
Lack of awareness of advanced disease and the symptoms of recurrence are other key themes the campaign is highlighting, as well as limited treatment options.
Clive Jones, Liberal Democrat MP for Wokingham, who was diagnosed with primary breast cancer 17 years ago, said at the launch of a photography exhibition featuring ambassadors for the campaign, that access to specialist nurses is still a postcode lottery in the UK.
‘There are also long-standing data collection shortfalls which undermine effective service planning and also a low awareness of breast cancer symptoms amongst the public and in primary care,’ says Mr Jones.
Mr Jones said he hoped some of these issues would be addressed in the government’s National Cancer Plan, expected to be published early this year.
Claire Myerson: Living with limited options
Moments that Count ambassador Claire Myerson, 55, a retired IT director, who lives in Oxfordshire, was diagnosed with primary breast cancer over 10 years ago and advanced breast cancer in 2016.
‘People don’t understand that advanced breast cancer is treatable, but not curable, and the prognosis is not great beyond a few years,’ says Claire, who has two children in their twenties.
‘The perception in the UK is that breast cancer is now largely ‘fixed’ which sadly isn’t true, as every year around 11,500 people die of breast cancer.’
Claire is joining a call for a national cancer registry to be set up to identify how many people are living with advanced breast cancer.
‘You can’t build a business case for employing more specialist nurses specifically trained and experienced in offering physical and psychological support to women with advanced breast cancer if you don’t know how many there are,’ says Claire.
‘If this information is not collected routinely by hospitals, how can commissioners and healthcare providers identify the needs of their local population and plan services for them?’
Although Claire describes her treatment regime as ‘extremely gruelling’, her condition is stable, and she has a good quality of life most of the time (apart from immediately after her IV treatment, which she has every three weeks) and says it’s not all ‘doom and gloom’. She still manages to go on holidays, walk her dog and go out for dinner, and socialise with friends and family.
‘I’ve tried very hard to manage my mind over the period of time I have been living with this and live my life properly, making the most of every day,’ says Claire. ‘Having breast cancer has given me an appreciation of how precious life really is.’
Claire is fully aware, though, that if or when her current drug treatment stops working, there is only one other drug available for her.
‘I just hope I stay alive long enough for other drugs to come through before I run out of options. Others have not been so lucky – it is extremely chastening that of a group of nine close friends with [advanced] breast cancer, I’m the only one left.
‘There just isn’t enough money going into research and understanding [advanced] breast cancer to stop people dying from this. My hope for the future is that by 2050, there will be a cure for this, and no one will die from [advanced] breast cancer.’
Laura Middleton-Hughes: Symptom awareness
Former hairdresser Laura Middleton-Hughes, 37, who lives in Norwich, Norfolk, with her husband Brad, an engineer, 43, wants more awareness of the symptoms of advanced breast cancer, after she mistook her recurrence for a shoulder pain sports injury.
‘I just thought I’d got a rotator cuff injury and put off going to my GP for six months,’ says Laura, who was just 28 when she was diagnosed with advanced breast cancer, following her primary breast diagnosis at 25.
‘My cancer had come back – this time in my shoulder, spine and pelvis. It was stage 4 and terminal,’ recalls Laura.
‘I was just so shocked. I say I lost everything that day – more treatment meant I would never have children, which I’d always wanted, and I also needed a shoulder replacement, which meant I’d lose some of my arm’s function and wouldn’t be able to work as a hairdresser anymore. I just fell into this black hole and couldn’t see the light. It was a very lonely place to be.
‘I think when people hear you have secondaries, they are just expecting you to die soon and for your treatment to stop working.’ Through social media, Laura met Nicky Newman (who sadly passed away in 2023), and they co-founded the advocacy group Secondary Sisters on Instagram, now a global online community with 22.3k followers.
‘Through the group, we supported each other and educated people on what [advanced] breast cancer was because there’s this narrative of people assuming your treatment will stop working soon and you will die. You get questions like ‘how long have you got?’ says Laura.
‘We wanted to show that you can live with an [advanced] breast cancer diagnosis; it might not be the life you wanted, but you can still live quite well. It’s not necessarily about living a long time, because actually none of us can guarantee we will still be here in a year or two, but what I can say is even if it’s a shorter life, you can still have a very good one.
Laura makes the most of whatever time she has left. ‘I call it my living list (a bucket list is too negative) and have been to the Maldives, the Caribbean and most of Europe. I spend time with my nieces and nephew too, and seen one of them start school. I’ve also got two cocker spaniels called Tilly and Luna, who I adore.’
She has also packed in reading the weather report on a local TV station, tea at Claridge’s, visiting spas, walking with alpacas, interviews on live TV and working on advocacy campaigns.
‘My hope for the future is that there will be more treatments for women with advanced breast cancer to keep us alive for longer.’
Juliet FitzPatrick: The ongoing fear of recurrence
Juliet FitzPatrick, 64, a retired writer and researcher who lives in Buckinghamshire, with husband Liam, also 64, was diagnosed with primary breast cancer in 2016 after a routine mammogram. She still worries about the disease coming back.
‘Not as much as in the past, but it’s always there at the back of my mind,’ she says. I don’t think there is enough information about recurrence and what to look for,’ she says.
‘I was lucky that my doctor told me, but some doctors just don’t mention to patients that it can come back 20 years later. If I have any pain that doesn’t go away, I’ll always get it checked out by my GP.’
Juliet says the late campaigner Jo Taylor, founder of MetUpUK, an advocacy group for women with advanced breast cancer, who died in November, worked hard in this area with her ABC diagnosis guide information, to try to raise awareness of the red flags of recurrence (Novartis is not responsible for the content on both websites).
‘I’ve talked to many women with [advanced] breast cancer, and all they want to do is live the best life they can for as long as possible.’
- Claire, Laura and Juliet are ambassadors for the Moments that Count campaign, set up to provide knowledge and support to patients with advanced breast cancer.
¹Mayor. A fifth of women with breast cancer have a recurrence, new
UK figures show. British Medical Journal. June 2012. Available at: A
fifth of women with breast cancer have a recurrence, new UK figures
show | The BMJ (Accessed April 2024).
²Palmieri et al. Estimated Prevalence of Metastatic Breast Cancer in
England, 2016-2021. JAMA Network Open. 5(12). December 2022.
Available at: https://jamanetwork.com/journals/jamanetworkopen/
fullarticle/2799862 (Accessed April 2024).
³Cleveland Clinic. Breast Cancer Recurrence. Available at: https://
my.clevelandclinic.org/health/diseases/8328-breast-cancerrecurrence.(
Accessed April 2024).
⁴Secondary breast cancer is one of the leading causes of death in the UK in women between the ages of 40-59. Office for National Statistics (ONS), released 20 May 2025, ONS website, statistical bulletin, Death registration summary statistics, England and Wales: 2024
UK | December 2025 | FA-11569384
