Cancer DetectivesOn 20th November 2025 the first episode of a 3-part series called 'Cancer Detectives' was shown on Channel 4 - which we had helped during its development. It featured Professor Sarah Blagden and some of her work on cancer prevention at Oxford University. Sarah is well known to the LFS community, working with us at the Trust now for many years, including regular presentations at our conferences. The program also featured the MILI trial, with LFS patient Ella Hines doing a fantastic job of showing viewers what life is like for those living with LFS. If you haven't seen the program, it's definitely worth a watch! It also hinted at some of the things in the pipeline for future cancer prevention studies. Rest assured we will continue working with Sarah and her fantastic team on these developments too. |
MILI updateThe MILI trial is continuing to open new centres. Currently there are 7 centres open: Oxford, Cambridge, Nottingham, Guy's, Aberdeen, Southampton, Leicester and Nottingham. Due to open early this year: Royal Marsden and Manchester. Recruitment is still slower than we need. If you're unsure about taking part if asked, please take a look at our list of FAQs, talk to your cancer genetics team or talk to us by replying to this email. Remember, whether you are selected for metformin or not, all participants will receive annual whole-body MRI screening. We can also report that a German MILI trial has now opened. This trial will also test the same dose of metformin as the UK trial, and patients will be randomly selected to receive either metformin and screening or screening alone. The plan is that the results of the UK and German trials will be combined in the future so we can get a clearer picture of the impact of metformin on cancer incidence in people with LFS. |
Lunch meet upA group of 12 of us, plus two young supporters, gathered for lunch in a central London pub on a Saturday back in November. It was a great chance to relax together, catch up and generally find out a little more about each other. A good time was had by all. Look out for the date of the next meet-up in the spring!
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Save the date - LFS UK 2026!The date for LFS UK 2026 has already been set, so mark your calendars - we'll once again be gathering at International Student House in London, this time on Saturday 12 September. More information, including the full programme and a link to book free tickets will be coming soon, so keep your eyes peeled. |
CTOS meetingThe Connective Tissue Oncology Society (CTOS) is the international society for sarcoma doctors, researchers and patient advocates. Every year the annual CTOS conference brings the entire sarcoma community together to discuss the latest clinical trials, treatment changes and scientific research. The 2025 conference took place in Florida in November, and this year included an international meeting to discuss cancer predisposition and sarcomas - a topic of paramount importance to people with Li Fraumeni Syndrome. The aim of the meeting was to create international guidelines on how best to treat sarcomas when a person has LFS or other predisposition syndromes. Key questions included the role of radiotherapy, the impact of screening, how best to handle follow-up and more. The meeting included representatives from across the world, including our chairman Pan Pantziarka, and experts from many different medical disciplines. Overall the meeting was very constructive, with wide areas of agreement, as well as some areas where differences of opinion were subject to intense but friendly discussion. One of the main outcomes of the meeting will be a paper that will outline the best practices for treating sarcoma patients with cancer predisposition syndromes. This will be a valuable resource for patients and doctors alike. It will also provide a baseline that we can build on as new research emerges. The Trust, together with other patient advocates, is strongly supportive of such efforts to improve services to make sure that every patient receives the best available care. |
Meet the Team |
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In this section we'll get to know a member of our team a little better - this time we're speaking to Louis Pantziarka
How did you get involved at the Trust? My parents started the Trust after my brother - George Pantziarka - died of cancer. I was 12 years old when he died, so I wasn't immediately involved! As time has passed I've become more active though. What does your role at the Trust entail? I produce this quarterly newsletter, so it's been good fun interviewing myself. I work in growth marketing so this feels like the best way to help out. I'm also on hand at our annual conference. What do you enjoy most about working with the Trust? Seeing the impact the Trust has on families affected by LFS. Also seeing my parents turn something incredibly painful into something that helps other people is a real source of pride for me. I think I can say with confidence that George would be proud of the work that gets done in his name. What is your greatest accomplishment? Everyone seems to find this question hard to answer and now I'm on the other side I see why. In this context I guess I would say I'm proud of the fact that I haven't let losing my brother as a child, define who I am as an adult. What do you do in your spare time? Well I'm learning Greek, I do some freelance work to make some extra money and I help out with the Trust. Away from that I can often be found in the pub with friends or watching the football. What are you reading at the moment? Might raise some eyebrows but currently I'm half way through 'Stalin: The Court of the Red Tsar'. I'm a big history nerd and it's nice to have some light reading before bed... |
The trust survives thanks to your ongoing support - we couldn't do it without you.Feedback on this newsletter? Email press@tp53.org.uk or message us on social media:
George Pantziarka TP53 Trust |
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