About us

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

 

STOP PRESS

Teva levothyroxine 100mcg brand withdrawn from sale in UK.

100mcg levothyroxine tablets made by TEVA Pharm have been withdrawn from sale following concerns of the MHRA about interchangeability of the product with other brands of the drug. Some patients have experienced a loss of control of thyroid stimulating hormone (TSH) levels when switching between TEVA levothyroxine and other levothyroxine brands.

TEVA's manufacturing licence has been suspended by the MHRA pending resolution of the issues concerned. Supplies of this 100mcg brand should no longer be available for distribution to patients.
If you are concerned, please speak to your GP or specialist.

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Please take a look at the 'Events' and 'Fundraising' pages to see what we have done, as a Group, to support Thyroid Cancer patients. If you wish to contact us, please click on 'Contact us'.

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 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 by thyroid cancer. Anyone wishing to contact a 'buddie' should contact the group by phone or e-mail.( See Contact us).

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International Thyroid Cancer Patient Survey

The survey was conducted by the Thyroid Cancer Alliance (TCA) in association with Genzyme Corporation in March 2010 with nearly 2,400 patient respondents from 40 countries. It is the first joint initiatve that unites TCA's interest in bringing the patient voice to the medical community.

Key statistics

> 93% of respondents indicated they were not offered psychological support at diagnosis

> 84% were not given details of a patient support organization at diagnosis.

> 45% said that more information would have improved their cancer journey.

> 64% were not offered clear written information about thyroid cancer or its treatments at diagnosis.

> 39% of patients experienced low blood calcium levels and 36% experienced voice problems following surgery.

 

HiLo Trial

This trial has completed. The results will be published in the New England Journal of Medicine , later this year.

 

 

Thyroid Cancer Forum- UK (TCF-UK)

www.thyroid-cancer-forum-uk.org

This 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.

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.

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

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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