About us

Welcome to the web site of the
Thyroid Cancer Support Group - Wales.
Registered Charity No 1113774

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.

The following website has been set up for the benefit of new and existing patients. It has been developed by Dr Laura Moss, Consultant Oncologist at the Velindre Cancer Centre, Whitchurch, Cardiff. It provides a concise summary of thyroid cancer and answers many questions that patients may have.
www.thyroid-cancer-forum-uk.org

Do you have MEDULLARY thyroid cancer?
If so, you should consider taking part in the following study.

Thyroid Cancer Forum- UK (TCF-UK) is a national organisation that facilitates communication, education, research and data collection between consultants and scientists working in the thyroid cancer field. There is also a website accessible to anyone that provides general information on thyroid cancer as well as links to other information sources ( www.thyroid-cancer-forum-uk.org ).

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

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We wish to inform new patients of a very important trial which is taking place across the U.K. It is being run at various cancer centres and is being co-ordinated by Pablo Alvarez of University College, London.
New patients may be asked to volunteer to take part in this important trial. Please give any request serious consideration, as the results of the trial will help improve the treatment regime for future thyroid cancer patients, following surgery.

The following summary has been provided for inclusion on this web site. Should anyone require further details, please discuss with your consultant:-

HiLo

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

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The group was started at the suggestion of Dr Laura Moss, Consultant Oncologist at Velindre Hospital in Whitchurch ,Cardiff. Dr Moss is our Honorary President.

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).

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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.