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METUPUK

@METUPUKorg

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Advocacy,campaigning & activism group aiming to turn metastatic breast cancer(MBC) into a chronic illness & support MBC patients #BusyLivingWithMets #DarkerPink

United Kingdom
Joined August 2016
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@METUPUKorg
METUPUK
18 hours
METUPUK are delighted that the drug olaparib has been accepted by the SMC for treating HER2-negative, locally advanced or metastatic breast cancer with germline BRCA1 or BRCA2 mutations for routine use on the NHS in Scotland. This follows on from the NICE recommendation for olaparib in January 2025 for metastatic breast cancer patients with inherited BRCA1 or BRCA2 mutations. Olaparib is now available in all areas of the UK, bringing NHS access in line with private care. Olaparib is an oral drug which has been shown in clinical trials to increase the time patients have before their cancer gets worse. It can delay the need for chemotherapy meaning fewer hospital visits and a better quality of life for patients. It is the second targeted parp inhibitor drug recommended by available for the treatment of patients with BRCA mutated metastatic breast cancer. Oncologists now have more choice to select the most appropriate drug for their patients. Founder of METUPUK, Jo Taylor, said: “We are delighted that the SMC has recommended olaparib for the treatment of BRCA1 or BRCA2 mutated metastatic breast cancer. It is vitally important that there is equity of drug access in England, Wales, Northern Ireland and Scotland, to avoid unfair and divisive postcode lotteries.” #drugapproval #DarkerPink #BusyLivingWithMets #IAmThe31 #DyingForACure #MetastaticBreastCancer #severitymodifier #SecondaryBreastCancer #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer
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@METUPUKorg
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We are delighted to announce the appointment of a new Policy and Public Affairs specialist at METUPUK. We have been very lucky to be able to gain the expertise of someone who we have previously worked with. Our Specialist has worked with Jo and members of the team in the past and has started with us focussing on our strategy to help drive change for metastatic breast cancer patients. We want to acknowledge that this has only happened due to past and current fundraising that supports METUPUK. This type of financial support means that we can grow and be able to address the issues, ultimately leading to change for MBC patients. If you can support METUPUK with fundraising this year, please contact our fundraising trustee Emma.Smith@metupuk.org.uk We are very excited for this new addition to the METUPUK family! #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer #WhoReallyCares #severitymodifier
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@METUPUKorg
METUPUK
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In January 2025, Jacqui Crewe died from metastatic breast cancer. Jacqui was a well-known person in the breast cancer community. She volunteered for several charities including METUPUK and Make 2nds Count and often supported women with metastatic breast cancer in online groups. Jacqui gave her time and experience generously to help others. Jacqui was diagnosed with primary breast cancer in 2006. Seven years later, in 2013, she was diagnosed with metastatic breast cancer, after initially being misdiagnosed with inflammation caused by radiotherapy. Jacqui joined our Breast Cancer Darker Side of Pink Campaign in 2021. She was one of the 31 women of all ages and from all walks of life who volunteered to be videoed and take part. The day of the filming was the first time most of us had met and Jacqui was brilliant at getting her point across. Everyone selected their own script to read, and the one that Jacqui chose was about the need for research to focus on metastatic breast cancer and provide treatments which improve survival. Her script is exactly why we at METUPUK advocate for patients. We are thankful that we met Jacqui and that she supported the work we did. A friend Michelle Kemp filled us in on her life. “She had 4 siblings, 5 children, 5 grandchildren as well as 4 great grandchildren. She loved going out for a cuppa or something stronger… and enjoyed walking her dogs daily. She always put others before herself.” Her family said “She was the bravest person we’ve ever known. Wasn’t giving up without every ounce of fight she had in her. Courageous up until the very end.” Our thoughts go out to her family and friends at this time. Please watch Jacqui's video #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer #WhoReallyCares #severitymodifier
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@METUPUKorg
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Our patient advocate Kirstin Spencer was interviewed by The Sunday Times discussing the potential that liquid biopsies could provide for metastatic breast cancer patients and how this could revolutionize treatment on the NHS. Here is the link to the article METUPUK are incredibly proud of Kirstin for the intelligence and dedication she brings to our advocacy work. Many of you will know of Kirstin’s work for drug approvals on behalf of METUPUK for the SMC - Scottish Medicines Consortium and NICE – National Institute for Health and Care Excellence. #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer #datasaveslives #severitymodifier #genomics #ctDNA
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@METUPUKorg
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This #WorldCancerDay we wanted to look at the impact breast cancer has worldwide. In 2022 there were 2.3 million new cases of breast cancer globally. One quarter of all cancer cases in women. 666,000 women died from metastatic breast cancer, 1 in 6 of female cancer deaths worldwide. Although the highest incidence of breast cancer is found in developed nations - Australia/New Zealand, Europe and Northern America, the highest mortality rates are in low/middle income countries eg. in Western Africa and Micronesia/Polynesia. Risk factors for mortality worldwide include late diagnosis and lack of standard treatments. In sub-Saharan Africa, 65% of patients are diagnosed with stage III or stage IV breast cancer and there’s a 5 year survival of 40%. This compares to 85% of women living 5 years in the UK. We know that early diagnosis cannot prevent metastatic breast cancer, but it does reduce the risk. The majority of breast cancer research is carried in high income countries, and this does not always translate to developing countries, where often mastectomy is the only treatment. In the poorest countries, most breast cancer deaths occur in younger women. In rural Ethiopa, the average age to die from breast cancer is 37. Access to treatment is a huge barrier. Some countries have no radiotherapy provision or full access to the minimum medicines for a basic health-care system as defined by the WHO - World Health Organization. These include cytotoxic chemotherapies, generic Herceptin and hormonal therapy. In many low income countries poverty and the cultural role of women is a barrier to medical care. Imagine the terror of being a woman in Afghanistan and finding a lump in your breast. You are not allowed to leave the house alone to seek healthcare. You must ask a male relative to accompany you. Not every woman has a loving husband, and many are widows. In 2023, the average monthly income in Afghanistan was just $32. When just living is a struggle for everyone, the sick fall by the wayside. This is the truth for many women this World Cancer Day. #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerSupport #DyingForACure #MetastaticBreastCancer #SecondaryBreastCancer #AdvancedBreastCancer #UnitedByUnique
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RT @METUPUKorg: Jo has written a blog, ‘How do we get better outcomes and survival for Metastatic Breast Cancer?’, ahead of #WorldCancerDay
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RT @METUPUKorg: This #WorldCancerDay we wanted to look at the impact breast cancer has worldwide. In 2022 there were 2.3 million new cases…
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RT @METUPUKorg: Today, World Cancer Day, some of the METUPUK team joined @macmillancancer and an amazing group of cancer charities, patient…
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METUPUK
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Today, World Cancer Day, some of the METUPUK team joined @macmillancancer and an amazing group of cancer charities, patient groups and colleagues from the NHS for Wes Streeting “In Conversation” with Nick Robinson. @wesstreeting MP and @nickrobinsonbbc discussed the upcoming Cancer Plan and the role of different organisations in making it happen. He was clear that not everything can be done at once, while focussing on the crisis in the NHS at the moment. (We took that as don’t expect approvals for everything we campaign for). Key takeaways for us: 1. Focus on faster diagnosis and quality of diagnostics (not clear that metastatic disease is included in this) 2. Wants an NHS that listens to patients (that’s good as we all have a lot to contribute) 3. Jo still manages to be ‘up and at em’ despite getting up at 4:30am to get to London 😂 4. Meeting @ashleydaltonmp was a highlight. Being part of the MBC club that no one wants to be in. 5. We always feel weird smiling in photos linked to metastatic breast cancer… however @madeleinemeynell beautifully summed it up, it’s not about cancer, it’s about friendships ❤️ (thanks to @breastcancernow for being our date) #worldcancerday #UnitedByUnique #metastaticbreastcancer #secondarybreastcancer #advancedbreastcancer #DarkerPink #IAmThe31 #severitymodifier
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RT @BreastCancerNow: This #WorldCancerDay, we're joining the cancer community to hear @wesstreeting's vision for cancer care. We've long c…
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@METUPUKorg
METUPUK
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This #WorldCancerDay we wanted to look at the impact breast cancer has worldwide. In 2022 there were 2.3 million new cases of breast cancer globally. One quarter of all cancer cases in women. 666,000 women died from metastatic breast cancer, 1 in 6 of female cancer deaths worldwide. Although the highest incidence of breast cancer is found in developed nations - Australia/New Zealand, Europe and Northern America, the highest mortality rates are in low/middle income countries eg. in Western Africa and Micronesia/Polynesia. Risk factors for mortality worldwide include late diagnosis and lack of standard treatments. In sub-Saharan Africa, 65% of patients are diagnosed with stage III or stage IV breast cancer and there’s a 5 year survival of 40%. This compares to 85% of women living 5 years in the UK. We know that early diagnosis cannot prevent metastatic breast cancer, but it does reduce the risk. The majority of breast cancer research is carried in high income countries, and this does not always translate to developing countries, where often mastectomy is the only treatment. In the poorest countries, most breast cancer deaths occur in younger women. In rural Ethiopa, the average age to die from breast cancer is 37. Access to treatment is a huge barrier. Some countries have no radiotherapy provision or full access to the minimum medicines for a basic health-care system as defined by the WHO - World Health Organization. These include cytotoxic chemotherapies, generic Herceptin and hormonal therapy. In many low income countries poverty and the cultural role of women is a barrier to medical care. Imagine the terror of being a woman in Afghanistan and finding a lump in your breast. You are not allowed to leave the house alone to seek healthcare. You must ask a male relative to accompany you. Not every woman has a loving husband, and many are widows. In 2023, the average monthly income in Afghanistan was just $32. When just living is a struggle for everyone, the sick fall by the wayside. This is the truth for many women this World Cancer Day. #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerSupport #DyingForACure #MetastaticBreastCancer #SecondaryBreastCancer #AdvancedBreastCancer #UnitedByUnique
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@METUPUKorg
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Jo has written a blog, ‘How do we get better outcomes and survival for Metastatic Breast Cancer?’, ahead of #WorldCancerDay. It highlights the stark disparities in cancer outcomes and explains why we need a dedicated 10-year cancer plan, alongside an urgent focus on cancer research, to drive better outcomes and improve survival for patients. METUPUK does everything we can to amplify women’s voices and tackle key issues, including awareness, drug access, access to clinical trials, and data collection. We need to be counted while we are alive - not just when we are dead. These are our aims and objectives as a charity. You can read the blog via this link #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer #datasaveslives #WhoReallyCares #severitymodifier #UnitedByUnique
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Secondaries On The 2nd. We want you to know about the signs and symptoms of #MetastaticBreastCancer so we are sharing our infographics that highlight what you should be aware of if you have had a primary breast cancer diagnosis. These infographics are signposted by NHS England and used worldwide. They are translated into 12 languages. We know that it can be hard to even think about a recurrence and MBC, but knowledge is power, and if you have any of these symptoms please speak to your medical team. Advocating for yourself is the most important thing you can do for yourself. As we are focusing on awareness one of METUPUK's key aims, we'd be interested to start seeing your stories on how your #secondarybreastcancer was diagnosed and what signs you think people ought to be looking for. Use the #2ndsonthe2nd and we'll share your posts. Here's the link to the infographics #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancer #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer
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10 days
Direct link to the Annual Report is here 👇 Please read and share our achievements #metastaticbreastcancer
@METUPUKorg
METUPUK
11 days
As a Charity, we are required to produce an annual report explaining the work we do, the benefits and our finances. We also showcase our wonderful volunteers and fundraisers who make it all happen. METUPUK are always very proud to produce this, as a small but mighty charity. The report is available to read on our website If you would like to get involved with our work, fundraise for us or have any feedback, please let us know at contact@metupuk.org.uk Reflecting on a past year is with mixed feelings. The incredible highs are alongside honouring our friends and volunteers who died during the year and the legacy that lives on. We are sending thoughts to all of the loved ones of those mentioned in the report, no longer here. #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer
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@METUPUKorg
METUPUK
11 days
As a Charity, we are required to produce an annual report explaining the work we do, the benefits and our finances. We also showcase our wonderful volunteers and fundraisers who make it all happen. METUPUK are always very proud to produce this, as a small but mighty charity. The report is available to read on our website If you would like to get involved with our work, fundraise for us or have any feedback, please let us know at contact@metupuk.org.uk Reflecting on a past year is with mixed feelings. The incredible highs are alongside honouring our friends and volunteers who died during the year and the legacy that lives on. We are sending thoughts to all of the loved ones of those mentioned in the report, no longer here. #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer
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@METUPUKorg
METUPUK
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Jo has been part of the Breast Pathway Board for the Greater Manchester Cancer Alliance for around 10 years. She got involved originally because she wanted to raise awareness about metastatic breast cancer and ensure her red flag infographics could be shared with healthcare professionals across Greater Manchester. Through her own personal experience, and through speaking to other patients, she wanted to make sure that all patients were aware of the signs and symptoms of what to look out for and what life living with MBC might be like. Over the years Jo has championed the work of the Alliance, worked to bring about change and was delighted in 2023 when the Alliance supported the first patient-led Metastatic Breast Cancer conference in Manchester. Jo was awarded the British Empire Medal in the 2025 New Years Honours list for services to breast cancer as a patient advocate. Read more about her work with Greater Manchester Cancer Alliance Patient representative #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer #datasaveslives
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METUPUK
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Well done to our METUPUK advocate for Northern Ireland Ann McBrien who has worked with Cancer Focus NI and their research on the incidence & prevalence of metastatic breast cancer in Northern Ireland. The research was published in JAMA Open Network. Here is the link to the publication Whilst this may sound like a simple task, it is still proving a significant challenge in England, Wales and Scotland. Thank you Ann for your hard work to raise the profile of MBC and to get patients counted in Northern Ireland. We hope that this researched will be recognised going forward and that patients will finally be counted.
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RT @abcdiagnosis: Please have a watch on That's TV Manchester with Jo being interviewed by Charlie Waldren about the British Empire Medal a…
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RT @abcdiagnosis: Jo was interviewed on Tony Livesey's show on Radio 5 Live about her British Empire Medal and the work she has done being…
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