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Charity No 1113774 |
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About us Welcome
to the web site of the We
are a small group of thyroid cancer patients in South Wales who have
joined together to set up a self-help support
group for the benefit of thyroid cancer patients. Do you have MEDULLARY thyroid cancer? One aspect of thyroid cancer management that is of interest to the group is the treatment of MEDULLARY thyroid cancer. This is a rare disease and therefore no single doctor has large numbers of patients under their care. For these reasons it is difficult to analyse the various treatment options available. TCF-UK has therefore embarked on a national project to collect information on this rare disease so that we are better placed to make treatment decisions in the future. As TCF-UK is not part of the NHS (although all members work in the NHS) we cannot collect the necessary data without asking the permission of the patients involved. The data collected is essentially anonymous and can only be accessed by your own doctor and the TCF-UK data controller. Due to the rarity of the disease it will take several years for us to collect enough data for analysis. If you have medullary thyroid cancer and would like your information to be collected, please contact your thyroid cancer specialist or me so that we can facilitate this project. Not all thyroid cancer doctors are TCF-UK members however, so they may not be aware of the project, but hopefully, they will be willing to join or to let me collect information on your behalf. If you require any further information please do not hesitate to contact me. Dr Laura Moss Consultant Clinical Oncologist at Velindre Cancer Centre, Cardiff Director and Data Controller of TCF-UK contact@thyroid-cancer-forum-uk.org .............................................................END...................................................................
A multicentre randomised trial of high versus low dose radioiodine, with or without rhTSH, for remnant ablation following surgery for differentiated thyroid cancer HiLo is the first ever national clinical trial for patients with thyroid cancer in the UK. It is funded by Cancer Research UK and will be run across the National Cancer Research Network. The trial has involved the successful collaboration between oncologists, surgeons, nuclear medicine physicians, endocrinologists, biochemists, epidemiologists and trial co-ordinators. HiLo is aimed at patients with differentiated thyroid cancer who have had a total thyroidectomy. There are two research questions, both of which have been considered by the thyroid clinical community for several years but have not yet been resolved: 1. Whether a low administered activity of radioiodine (1.1 GBq) has a similar ablation success rate as 3.7 GBq 2. Whether giving rhTSH (Thyrogen) during the two days before ablation is associated with a similar ablation success rate as having thyroid hormone withdrawal (2 to 4 weeks before ablation). No previous trial of thyroid cancer has had this design, in which these two objectives can be addressed simultaneously. HiLo aims to recruit 468 patients, making it the largest randomised trial of its type in this disease group. The results and recommendations from HiLo will be used in national and international clinical guidelines on the treatment and management of thyroid cancer. So far, about 20 centres are participating and patients have been recruited since February 2007. The Chief Investigator is Dr Ujjal Mallick, University of Newcastle. For more details about the trial and how to participate please contact the trial co-ordinator, Pablo Alvarez (University College London): Email: p.alvarez@ctc.ucl.ac.uk Telephone: +44 20 7679 9887 The group first got together in December 2003 under the guidance of Tenovus Specialist Nurse, Heidi Trotman. Letters were sent to patients to enquire whether anyone would be interested in forming a self help group. A very positive response was received and so the group was formed. Group volunteers are available to provide a 'buddie' system for anyone affected by thyroid cancer, whether as a patient, relative or friend. They could have a reassuring chat with someone who is or has been affected with thyroid cancer. Anyone wishing to contact a 'buddie' should contact the group by phone or e-mail.( See Contact us). Our thanks to the TORFAEN Community Grid for Learning (www.torfaenonline.co.uk) for the training received by the Secretary to enable this website to be set up. Special thanks to Course Tutor, Sian Westcombe for her help and patience in setting up this web site with me. Diolch yn fawr! Sian.
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