The 6th edition (2023) of the booklet Understanding Cancer of Unknown Primary has been published by Macmillan Cancer Support. This is the booklet that we originally developed with Cancerbackup, before it became part of Macmillan. It is revised every 3 years.
Trustee Philippa McEwan had a busy November raising funds for our work. First, a coffee morning raising £970 and then a sponsored walk – The Tamsin Trail – in Richmond Park raising a further £1,130. Photos show Philippa sporting our T shirt in Richmond Park and the delicious CUP cakes from the Coffee Morning.
Health Secretary, Steve Barclay, has announced that Government will not be publishing the 10 Year Cancer Plan which was expected last year. This is hugely disappointing to the many cancer charities that have worked on its development. Instead, Government will publish an interim 5 year Major Conditions Strategy later this year, of which cancer will be only one part. In
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In conjunction with SBK we have another online event on Tuesday 7 March (09:00-15:50). This is an opportunity to look at the implications of RDCs and WGS on the patient pathway. Speakers and topics are shown here on the SBK website.
NCRI are conducting a survey to help identify the research priorities for CUP. This is not limited to clinicians. Anyone with an interest in the next steps for CUP research in the UK is invited to complete the survey. Those outside the UK are most welcome to contribute as well. The survey can be found here until 3 Feb: https://ncri.checkboxonline.com/ncri-muocup-study-group—research-priorities-survey-
Whole Genome Sequencing (WGS) becomes Standard of Care for CUP patients. Cancer of Unknown Primary (CUP) WGS in all ages and in upfront testing is included in the National Genomic Test Directory in the 31st October 2022 publication as a standalone referral indication (M226.4). The National Genomic Test Directory specifies which genomic tests are commissioned by NHS England, the patients
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Research by Natalie Cook’s CUP group at the Christie in Manchester has shown that a significant number of provisional CUP patients can be put onto a site specific pathway for Intrahepatic cholangiocarcinoma. “By reclassifying some of those CUP patients with cancer in the liver as bile duct cancer patients, this would lead to increased treatment options and a better prognosis.
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Every year, during the last full week of September, we ask our supporters to help raise awareness of CUP. This year we would ask all those who have been affected by CUP now or in the past – patients, relations, friends and colleagues of patients – to tell others of this extraordinary and challenging cancer. Although the unknown is gradually
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SJK Foundation (Ireland) and Missie Tumor Onbekend (Netherlands) – two national CUP patient organisations – have organised some excellent webinars for Awareness Week on 19, 21, and 23 Sep on the theme of ‘The patient journey’. To see the details and to sign-up see this link.
The Department of Health and Social Care have announced that: Given the recent change in Secretary of State for Health and Social Care, publication of the ten-year cancer plan is on hold at the moment. We will communicate further when we have more clarity.