{"id":11512,"date":"2026-01-27T15:24:46","date_gmt":"2026-01-27T16:24:46","guid":{"rendered":"http:\/\/curiousdrive.com\/?p=11512"},"modified":"2026-01-28T21:33:46","modified_gmt":"2026-01-28T21:33:46","slug":"why-every-story-counts-when-it-comes-to-living-with-advanced-breast-cancer","status":"publish","type":"post","link":"http:\/\/curiousdrive.com\/index.php\/2026\/01\/27\/why-every-story-counts-when-it-comes-to-living-with-advanced-breast-cancer\/","title":{"rendered":"Why every story counts when it comes to living with advanced breast cancer"},"content":{"rendered":"
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The Moments That Count campaign highlights challenges facing advanced breast cancer patients, including support, awareness and treatment gaps (Picture: Kristina Varaksina)<\/figcaption><\/figure>\n
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.<\/h6>\n

Patients living with incurable advanced breast cancer are the focus of a campaign to bust myths about what it\u2019s like to live with a terminal diagnosis of the disease. <\/p>\n

Just over one in five people diagnosed with breast cancer will experience a recurrence of it\u00b9, 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 body\u00b2, most commonly the bones, lungs, liver and brain. <\/p>\n

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 years\u00b3<\/em>.<\/p>\n

The Moments that Count<\/a> <\/span>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.  <\/p>\n

A recent YouGov survey has shown 40 per cent of adults in the UK have never heard of advanced breast cancer\u2074, and 36 per cent of UK adults don\u2019t 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.<\/p>\n

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. <\/p>\n

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Lib Dem MP Clive Jones urges fair access to nurses and better data as the National Cancer Plan approaches publication (Picture: Luke Baker)<\/figcaption><\/figure>\n

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. <\/p>\n

\u2018There 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,\u2019 says Mr Jones. <\/p>\n

Mr Jones said he hoped some of these issues would be addressed in the government\u2019s National Cancer Plan, expected to be published early this year. <\/p>\n

Claire Myerson: Living with limited options<\/h2>\n

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. <\/p>\n

\u2018People don\u2019t understand that advanced breast cancer is treatable, but not curable, and the prognosis is not great beyond a few years,\u2019 says Claire, who has two children in their twenties. <\/p>\n

\u2018The perception in the UK is that breast cancer is now largely ‘fixed’ which sadly isn\u2019t true, as every year around 11,500 people die of breast cancer.’<\/p>\n

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.  <\/p>\n

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Claire Myerson highlights advanced breast cancer’s incurability and urges the creation of a national patient registry (Picture: Kristina Varaksina)<\/figcaption><\/figure>\n

\u2018You can\u2019t 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\u2019t know how many there are,\u2019 says Claire. <\/p>\n

\u2018If 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?\u2019  <\/p>\n

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\u2019s 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. <\/p>\n

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‘Having\u00a0breast cancer has\u00a0given me an appreciation of how precious life really is,’ says Claire (Picture: Kristina Varaksina)<\/figcaption><\/figure>\n

\u2018I\u2019ve 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,\u2019 says Claire. ‘Having breast cancer has given me an appreciation of how precious life really is.\u2019  <\/p>\n

Claire is fully aware, though, that if or when her current drug treatment stops working, there is only one other drug available for her.  <\/p>\n

\u2018I 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 \u2013 it is extremely chastening that of a group of nine close friends with [advanced] breast cancer, I\u2019m the only one left. <\/p>\n

\u2018There just isn\u2019t 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.\u2019 <\/p>\n

Laura Middleton-Hughes: Symptom awareness<\/h2>\n

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. <\/p>\n

\u2018I just thought I\u2019d got a rotator cuff injury and put off going to my GP for six months,\u2019 says Laura, who was just 28 when she was diagnosed with advanced breast cancer, following her primary breast diagnosis at 25. <\/p>\n

\u2018My cancer had come back \u2013 this time in my shoulder, spine and pelvis. It was stage 4 and terminal,\u2019 recalls Laura. <\/p>\n

\u2018I was just so shocked. I say I lost everything that day \u2013 more treatment meant I would never have children, which I\u2019d always wanted, and I also needed a shoulder replacement, which meant I\u2019d lose some of my arm\u2019s function and wouldn\u2019t be able to work as a hairdresser anymore. I just fell into this black hole and couldn\u2019t see the light. It was a very lonely place to be. <\/p>\n

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Laura Middleton-Hughes urges greater awareness after mistaking advanced breast cancer symptoms for routine shoulder pain (Picture: Kristina Varaksina)<\/figcaption><\/figure>\n

\u2018I think when people hear you have secondaries, they are just expecting you to die soon and for your treatment to stop working.\u2019 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. <\/p>\n

\u2018Through the group, we supported each other and educated people on what [advanced] breast cancer was because there\u2019s 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. <\/p>\n

\u2018We 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\u2019s 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\u2019s a shorter life, you can still have a very good one. <\/p>\n

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\u2018My hope for the future is that there will be more treatments’ says Laura (Picture: Kristina Varaksina)<\/figcaption><\/figure>\n

Laura makes the most of whatever time she has left. \u2018I 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.\u2019 <\/p>\n

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. <\/p>\n

\u2018My hope for the future is that there will be more treatments for women with advanced breast cancer to keep us alive for longer.\u2019<\/p>\n

Juliet FitzPatrick: The ongoing fear of recurrence  <\/strong><\/h2>\n

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. <\/p>\n

\u2018Not as much as in the past, but it\u2019s always there at the back of my mind,\u2019 she says. I don\u2019t think there is enough information about recurrence and what to look for,’ she says.<\/p>\n

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Juliet FitzPatrick on lingering fears of recurrence and calls for clearer information on breast cancer (Picture: Kristina Varaksina)<\/figcaption><\/figure>\n

\u2018I was lucky that my doctor told me, but some doctors just don\u2019t mention to patients that it can come back 20 years later. If I have any pain that doesn\u2019t go away, I\u2019ll always get it checked out by my GP.\u2019  <\/p>\n

Juliet says the late campaigner Jo Taylor, founder of MetUpUK<\/a>, an advocacy group for women with advanced breast cancer, who died in November, worked hard in this area with her ABC diagnosis guide information<\/a>, to try to raise awareness of the red flags of recurrence (Novartis is not responsible for the content on both websites).<\/p>\n

\u2018I\u2019ve 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.\u2019 <\/p>\n