METUP UK

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UK’s only metastatic breast cancer patient advocacy charity. Led by patients, for patients.

Focused on the unmet needs of people living with metastatic breast cancer (MBC).

16/09/2026

We are delighted and relieved about the announcement from NICE to recommend Enhertu (trastuzumab deruxtecan) for people living with HER2‑low Metastatic Breast Cancer (MBC).

This decision comes after more than two years of campaigning by charities, clinicians and patients. During this time NHS patients with HER2-low MBC in England, Wales and Northern Ireland have been unable to access Enhertu despite patients in Scotland having access to it since late 2023. The long negotiations have taken place behind closed doors, leaving patients feeling shut out and undervalued. Enhertu has also been available to patients with HER2-low MBC using private healthcare during this time, exposing a two-tier system for those that can pay.

Access to innovative treatments must reflect the reality of living with incurable MBC. It is a disease that does not wait for time. Patients need better and kinder treatments, and improvements at every stage of the drug development process. Enhertu is an innovative treatment, but as with any MBC drug, the benefit each patient gains from it and the toxicity they experience will vary. We will continue to work collaboratively with our charity partners, Breast Cancer Now and Make 2nds Count, campaigning tirelessly to ensure patients experience equality of access to MBC drugs, irrespective of where they live geographically.

While this landmark recommendation is a hugely significant moment in the lives of people living with HER2-low MBC, we cannot forget those who did not live to see this day. We implore the Government, NICE and pharmaceutical companies to act with greater urgency so that nobody in the future is left waiting for life extending treatment. We remember those who have died in the time it has taken to reach this decision.

14/09/2026

Supporting someone with Metastatic Breast Cancer (MBC) can look different every day.

Sometimes it’s the practical things like making dinner, driving them to an appointment or taking care of the chores. Sometimes it’s simply listening, being present and reminding them they’re not alone.

And while you’re supporting someone else, it’s important to remember that your needs matter too. You don’t have to do it all on your own.

Save this Carer’s Corner for when you need a little guidance, and share it with someone supporting a loved one with MBC.

10/09/2026

It is with immense sadness that we share that Helen Crawford (Helen Crawford) a much-loved member of the METUPUK volunteer community has died of Metastatic Breast Cancer (MBC).

Helen was diagnosed with thyroid cancer and early-stage breast cancer in 2014. Sadly, in 2022 she was diagnosed with MBC. Her years as a nurse in the RAF shaped her character. She served with dedication, and the resilience and sense of purpose honed during her service continued throughout her treatment.

Helen was committed to METUPUK. As a volunteer, she gave her time to support campaigns, raised funds for the charity with her sister Emma, using her voice to raise awareness of the key issues affecting people living with MBC. Helen was a natural communicator, able to take complex topics and simplify them without dumbing them down. She represented METUPUK in Parliament with the Darker Side Pink and was the best of us at communicating with MPs. She shone.

Helen was key during the early days of METUPUK’s Enhertu for HER2-low campaign, speaking eloquently and passionately to press contacts about the inequality of a drug being available but not accessible to patients in England. Helen, Tracy Pratt and Jeannie Ambrose were all part of a clinical trial together, bonded by the need for HER2-low targeted treatments. All three women have now sadly died of MBC.

Helen was warm and kind. She had a way of making people feel seen and valued, putting others at ease with her great sense of humour. Whether behind the scenes or engaging directly with others, she brought integrity and compassion to every role.

METUPUK don’t talk about ‘fighting’ when it comes to cancer, but Helen’s tenacity, determination and grit to stay alive for her girls, keeping life as normal as possible, was always her ultimate goal.

We extend our heartfelt condolences from all at METUPUK to Helen’s girls, Lily, Robyn and Scarlett, her Mum and Dad, Emma (METUPUK Trustee), Kenny and all of Helen’s loved ones. Our thoughts are also with the MBC community who knew and loved her.

Helen’s legacy will be continued within our METUPUK work. We will carry you in our thoughts and hearts. Always.

09/09/2026

Not all Metastatic Breast Cancer (MBC) is the same.

We’re hearing the term “cured” starting to be used more often when talking about oligometastatic breast cancer, but is that where the evidence is currently?

Oligometastatic breast cancer describes a situation where cancer has spread to only a small number of sites. Research, including the recent OLIGOMA trial, suggests that some patients may achieve longer periods of remission and disease control when systemic treatment is combined with targeted treatment to all visible metastatic lesions.

The research is encouraging, but is not conclusive that oligometastatic disease can be cured long term. These findings are an important reminder of why access to specialist imaging, expert multidisciplinary teams and innovative treatment matters.

07/09/2026

We are delighted to report that the Scottish Medicine Consortium (SMC) has accepted both elacestrant and capivasertib with fulvestrant for use in the NHS in Scotland. These are the first drugs in their class accepted by NHSScotland, removing a postcode disparity between Scotland and the rest of the UK.

Capivasertib is an oral, targeted treatment used with fulvestrant following endocrine therapy for people with oestrogen receptor–positive, HER2-negative Metastatic Breast Cancer (MBC) with alterations in one or more of the AKT1, PIK3CA and PTEN genes.

Elacestrant is an oral endocrine therapy for some people with oestrogen receptor-positive, HER2-negative MBC with an activating ESR1 mutation who have already received endocrine therapy at first line treatment.

Eligibility for both drugs is confirmed by testing the tumour for specific genetic alterations using a ctDNA blood biopsy – a simple blood test with no invasive tissue biopsy needed.

METUPUK would like to extend a huge thank you to patient advocate, Kirstin Spencer, for her tireless work in helping to ensure these drugs are accepted in Scotland. Kirstin spent many hours researching the drugs, writing about them and presenting her research to SMC committees.

Currently there is no ctDNA testing available for these tumour alterations in NHSScotland. Plans are in place to provide testing, but it will take many months to build the infrastructure, workforce and lab accreditation required. Accredited labs elsewhere in the UK already carry out ctDNA testing.

We call on NHSScotland to provide a prompt interim testing solution. MBC patients don’t have time to wait.

04/09/2026

Remembering Kit Dzeryn MBE and the powerful voice she brought to METUPUK. 🤍

Kit was an integral part of our community, supporting us with writing blogs and helping to set up our Instagram page. She wasn’t afraid to speak out, challenge the status quo and use her voice to push for change.

These words, taken from Kit’s blog posts in 2020, still feel just as powerful and relevant today.

Her words are an important reminder of why we must keep speaking up, challenging and pushing for better.

We miss her voice deeply.

02/09/2026

Being told “it’s probably nothing” doesn’t always mean it is.

For people living with Metastatic Breast Cancer (MBC), getting answers isn’t always straightforward. Symptoms can be vague. They can overlap with everyday illnesses. And sometimes, concerns can be dismissed before the right questions are asked.

This , we’re talking about the importance of being heard.

If a symptom persists, changes or simply doesn’t feel right, you are entitled to ask questions, to go back, and to ask what else it could be. Insisting on further investigations when you have worries or concerns is important. Recognising a symptom is the first step. Being listened to about your concerns matters.

MBC kills 31 women every day in the UK. Each month in the UK approximately 961 women and 8 men will die of MBC. We need greater awareness not only of the signs and symptoms, but of the importance of taking persistent changes seriously.

Don’t be afraid to say “This isn’t normal for me.”

Save it. Share it. Keep the conversation going.

28/08/2026

Three years ago, the world turned pink.

As the Barbie movie dominated conversations, wardrobes and social feeds, we highlighted The Darker Side of Pink to shine a light on a reality that doesn’t get the same attention.

Every day in the UK, 31 people die from Metastatic Breast Cancer (MBC). While the world celebrated pink, we reminded people that for thousands living with MBC, pink represents something very different.

Three years on, our message remains the same. We still need more awareness. More research. More treatment options. More time.

Darker Side of Pink is still a reality for far too many people.

25/08/2026

Many people are surprised to learn that Metastatic Breast Cancer (MBC) has been legally recognised as a disability since 2009. Yet too many people living with MBC still face challenges accessing the rights, support and reasonable adjustments they’re entitled to.

Recognition is about more than a legal definition. It’s about ensuring people living with MBC can access the support they need at work, financially, and in everyday life.

We’re resharing this post because awareness of these rights remains just as important today.

Were you aware that MBC is recognised as a disability? We’d love to hear your thoughts in the comments.

21/08/2026

Some voices continue to make an impact long after they’re gone.

We’re resharing this collection of Tassia Haines’ illustrations as a reminder of the legacy she left behind. Through both her artwork and her advocacy, Tass gave a voice to experiences that are so often difficult to put into words, helping countless people living with Metastatic Breast Cancer (MBC) feel understood and less alone.

Her creativity, courage and determination continue to inspire our community, and her impact can still be felt today.

Tass will always be remembered by METUPUK, and we’re proud to continue sharing her work so that her voice, her message and her legacy live on.

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Manchester

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http://www.metupuk.org.uk/

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