Logo of Thyroid Cancer Support Wales
Thyroid Cancer Support Group  Wales Charity No 1113774
About us
Aims
Contact Us

Events

Committee
Useful links
Guest Book
Fund raising

 

About us

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

 

April 26th 2015

LONDON MARATHON 2015

Matthew Evans has kindly offered to run the marathon for us. Matthew lives in Tenby. He has set up a donating page on Virginmoneygiving.com. Should anyone wish to sponsor him on line, please go to:-

www.uk.virginmoneygiving.com/captaincymru to access Matthew Evans's fundraising page.

Matthew IS the real Caped Crusader !! (Captain Cymru)

 

2014 was the 10th Anniversary of the Group

Helen has produced a souvenir Newsletter .

A Tea Party was held on the 7th June to mark this event. It was a great success with old and new members able to meet in a social environment.The cake was made for the occasion!

Some photos of the Day
Both Sarah (2006) and John (2014) have run the London Marathon for us.

 

Helen presents Dr Moss, our Honorary President, with flowers to thank her for her support over the 10 years.

 

Helen gives her speech to thank everyone who has supported the group over our 10 years.

 

 

 

 

The Group have bought a bench to mark our anniversary. The bench has been donated to Velindre Cancer Centre and provids a much needed resting place outside the Out-patients department.

LONDON MARATHON 2015

We have one place for a runner to take part in next year's Marathon.
If anyone would like to take up this place and raise funds for our Group, please contact us by email (see Contact Us for details). Ideally, we are looking for someone who can get a lot of sponsorship.

London Marathon 2014

John completed the marathon in a very respectable time of 3hrs.19mins.49secs!
We are all very grateful for your massive effort to raise funds for our Group. Everyone is sending their CONGRATULATIONS !!
Donations received as at 14th April are £985 and counting!

Many thanks John from everyone at the Group for a superb effort on our behalf, we are most grateful!

Some photos from the day

drinkmedal !!

A well earned drink !! ..............................................Winner takes the medal !

Thank you!, Thank you!, Thank you !

John Williams has kindly agreed to run the London Marathon this year on the 13th April to raise funds for our Support Group. John is the son of one of my friends and I have known him since he was four years old! He is now a married man with two lovely childen, living in Surrey.

We are very grateful to John for his contribution to our charity.Please, please support John by donating via Virginmoneygiving.com and please tick the Gift Aid box so that we can maximise your donation by claiming back an extra 25% of your donation from HMRC.

DONATE
Please click the following link and donate. Thank you. Virginmoneygiving.com/johnwilliams75

 

UK guidelines on Thyroid Cancer

The Thyroid Cancer Support Group-Wales is pleased to be a named contributor to the new U.K Thyroid Cancer guide lines from the British Thyroid Association.

 

The National Anaplastic Thyroid Cancer Tissue Bank and Database project (NATT) was launched in 2013.

The project offers patients with this diagnosis a rare opportunity to participate in research. By collecting tissue and blood samples along with clinical information from across the UK, we will be able to gather a significant amount of data which will help us make progress with research in to this difficult to treat disease. We hope to learn more about why and how this type of cancer develops so that we can then develop new ways to treat it. This is going to be a long term project which will need to run over a number of years.

Patients who are interested in taking part will be asked to provide their consent for their already collected tissue samples (e.g. thyroid gland biopsy) to be donated to NATT. They will also have the option to donate a small blood sample and to have their clinical data collected. This will be stored securely and confidentially and will only be accessible by your own doctor and the study's chief investigator.

If you would like to find out more about NATT please contact the Chief Investigator via Laura.Moss@wales.nhs.uk or
phone 029 20316205
.

Thyroid Cancer Support Group -Wales are proud to have provided the total funding to enable this project to be launched.

 

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).

..........................................................

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.

 

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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