MET UP UK

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 https://buff.ly/4fLHmWA 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.

METUPUK are delighted that the drug olaparib has been approved by NICE for treating HER2-negative, locally advanced or metastatic breast cancer with germline BRCA1 or BRCA2 mutations for routine use on the NHS in England. Around 5-10% of breast cancers are caused by inheriting a faulty gene, and germline BRCA1 and BRCA2 mutations are the most common cause of hereditary breast cancer. They are passed down through families and people who have a BRCA1 or BRCA2 mutation have a 50% chance of passing it to their children. BRCA mutations can be inherited by both female and male children, and they greatly increase the risk of developing certain cancers. Women with mutations in their BRCA genes are more likely to develop breast cancer at a younger age. In men breast cancer is rare, but men with a BRCA mutation are 80 times more likely to get breast cancer. BRCA mutations are often random and any family can carry a BRCA mutated gene. However, the prevalence in certain ethnic groups can be much higher than in the general population. For example, 1 in 40 people with Ashkenazi Jewish heritage carry a mutated BRCA gene. Olaparib is an oral drug which has been shown in clinical trials to increase the time patients have before their cancer gets worse. It is the second targeted parp inhibitor drug recommended by NICE 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 NICE has recommended olaparib for the treatment of BRCA1 or BRCA2 mutated metastatic breast cancer. Olaparib is oral drug taken once a day, and can delay the need for chemotherapy. In practical terms, this means less hospital visits and a better quality of life for patients.” Olaparib will be made available in England, Wales and Northern Ireland, and is currently under consideration for use in Scotland. #drugapproval #DarkerPink #BusyLivingWithMets #IAmThe31#DyingForACure #MetastaticBreastCancer #severitymodifier #SecondaryBreastCancer #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

Please have a watch on That's TV Manchester with Jo being interviewed by Charlie Waldren about the British Empire Medal and what it means to her and her work. You can find this on Freeview Channel 7 which will be broadcast at 5:30pm and 6pm tonight! #metastaticbreastcancer #secondarybreastcancer #advancedbreastcancer #patientadvocate

Jo was interviewed on Tony Livesey's show on Radio 5 Live about her British Empire Medal and the work she has done being a patient advocate. Here's the link and just scroll to 1:50 to hear it. https://buff.ly/3DK9cW1 #metastaticbreastcancer #secondarybreastcancer #advancedbreastcancer #patientadvocate

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 hashtag #2ndsonthe2nd and we'll share your posts. Here's the link to the infographics https://buff.ly/3ZZd3pq #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

One of the hardest parts about living with metastatic cancer, of any kind, is finding your tribe – friends or colleagues who just understand because they are living with it too. But in finding those people, you go into the friendships knowing full well your tribe might die before you. This year has been particularly hard for the MBC community. Every single death cuts so deep. As a New Year is almost with us, today we'd like to honour some of our METUPUK colleagues and friends that have been involved and/or worked with METUPUK who have died in the last year. We know this will be a painful list for some of you but it's important to not only remember them, but to also remind the world how many of us are dying from this disease. 31 women every single day. The whole of 2024 included the Enhertu for HER2 Low campaign. A drug rejected in England (and currently the case also in Wales and NI) which would have potentially been options for Kris Hallenga, who died in May, for Rachel Davies who died earlier this month and countless other women with HER2 Low MBC. A 2-3 year median life expectancy is not a statistic to rejoice, but rather a demonstration of how much more needs to be done. METUPUK exists solely to urgently get more done for MBC patients. More awareness. More drugs. More trials. More data. #stage4needsmore #secondarybreastcancer #mbc #metastaticbreastcancer #DarkerPink #WhoReallyCares #IAmThe31 #Advancedbreastcancer #secondarybreastcancer Music: Bensound License code: 9KSDCAPIQ2YZYJFE

On behalf of all the Trustees, volunteers and supporters of METUPUK, we would like to offer our heartfelt congratulations to our Founder, Jo Taylor, for being awarded the British Empire Medal in The King's New Year Honours List 2025. A much deserved recognition for years of work in improving outcomes and quality of life for patients with breast cancer. Jo was diagnosed with breast cancer in 2007 at the age of 38, months after giving birth to her second child. After diagnosis, Jo was shocked by the lack of information on reconstructive surgical options for patients with breast cancer. To address this gap, she created the website After Breast Cancer Diagnosis (ABCD). Jo later added information on diet and exercise and set up residential Exercise Retreats for patients with a diagnosis of primary or metastatic (secondary) breast cancer. When Jo was diagnosed with metastatic breast cancer (MBC) in 2014 she once again became aware of lack of information being provided to patients. Although 30% of patients develop MBC, sometimes years after primary breast cancer, women were not being informed about what to look out for. Jo designed a Red Flag Infographic aimed at patients with a history of primary breast cancer to show the signs and symptoms of MBC. These Infographics are now signposted throughout the NHS. In 2016, Jo founded METUPUK after connecting with patient advocates in the USA. At first it was a loose coalition of likeminded patients campaigning for improvements in outcomes. In 2021 METUPUK became a registered charity, the only UK charity solely dedicated to patient advocacy for MBC. The four main areas of focus are increasing awareness of the signs and symptoms of metastatic breast cancer, increasing access to innovative treatments, improving information and access to clinical trials and improvements in data collection. We are very lucky to have Jo as our Founder and Chair of Trustees. Thank you for all your hard work.

To those who celebrate, those who don’t, those who would rather not this year and to those we have lost this year. We are sending love. However you get through the festive season, we hear you and continue with hope in the New Year to get the drugs, the data, the trials and the long term survival we all want. With love from all at METUPUK

Great coverage of our Darker Side of Pink Campaign in Brighton and thank you Elizabeth Carling for supporting the campaign which features your lovely twin sister and our friend and METUPUK volunteer Laura Ashurst. The campaign will be at Brighton Library until Saturday 4th January 2025. #METUPUK #WhoReallyCares #costofliving #severitymodifier #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #metastaticbreastcancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer #datasaveslives #advancedbreastcancer

We are delighted that the drug Elacestrant has been approved by NICE for patients with oestrogen receptor (ER)-positive HER2-negative metastatic breast cancer with ESR1 mutation that has progressed after at least 12 months of treatment with endocrine therapy and a CDK 4/6 inhibitor. Elacestrant is an oral treatment which increases the length of time before cancer gets worse in patients with a mutation in the ESR1 gene. The ESR1 gene makes oestrogen receptors, which receive signals from oestrogen to tell the cancer to grow. Up to half of the metastatic breast cancers previously treated with hormone therapy will develop mutations in the ESR1 gene, which can cause some hormone therapies to stop working. Testing for the ESR1 mutation will be carried out using a ctDNA assay, which tests for circulating tumour DNA which is shed into the bloodstream by cancer cells. The ctDNA test can be carried out with a simple blood test, not painful or invasive tissue biopsies. This drug approval will offer patients treatment targeted to their cancer and will delay the need for chemotherapy. The introduction of ctDNA into the breast cancer pathway is an exciting development which will benefit patients. We call on the NHS to ensure that the testing is up and running without delay, to enable patients to access testing at the right time and without delay. Patients should be able to promptly receive the treatment they desperately need. It is vitally important that the SMC assesses Elacestrant so that patients across Scotland also have access to this exciting new treatment. We would like to say a massive thank you to #METUPUK patient advocate Kirstin Spencer for her fantastic presentation to two NICE committees and for all the work she did behind the scenes. We would also like to say thank you to you, our wonderful patient community who provided feedback on what a new drug would mean to you. Your comments were passed on to the NICE committee and every comment helped our evidence submission. #drugapproval #DarkerPink #BusyLivingWithMets #IAmThe31 #DyingForACure #MetastaticBreastCancer #severitymodifier #SecondaryBreastCancer #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer