Is there a Thyroid support group in the Wakefield or Leeds areas?

[ThyroidThora]

I've had a partial thyroidectomy to remove cancer earlier this year and I would like to meet other people with similar problems to me, namely thyroid cancer, hypothyroidism and diabetes, to discuss treatments and get some support. My family try to be supportive but they don't really understand.

[ThyroidThora]

Hiya,

What does BTF stand for? Also, do you have their contact details?

Many thanks.

[ThyroidThora]

Hi,

Thanks for your reply.

I have looked at this organisation in the past when first diagnosed but found it difficult to negotiate and didn't really find the support I needed at the time. Hence, using this site and getting the online support I need. I wish there was a support group that I could visit and meet people like me.

[Hidden]

Hi

I work for Macmillan Cancer Support and one of the parts of my role is to support the development of self help and support groups. If you are looking for something in the Leeds / Wakefield area specifically for Thyroid Cancer, chances are so are other people, so it may be worth us having a conversation about getting a group started?

[ThyroidThora in reply to Hidden]

Hi Caroline 123,

That's a good idea, I would welcome some help as I do feel alone with this condition. I attend the Weston Park Hospital in Sheffield and there is a cancer support group for all cancers but it's too far to travel to on public transport on my own, and I cannot drive.

[Hidden in reply to ThyroidThora]

Hiya do you live in sheffield, or are you based in Leeds/ Wakefield area?

[ThyroidThora in reply to Hidden]

Hi I live in Wakefield.

[Hidden in reply to ThyroidThora]

Do you want to email me - [e-mail] and I can get in touch properly re looking at a support group?

[sorrel89]

Hi ThyroidThora,

There is very limited support for thyroid cancer unfortunately, there is the Butterfly Thyroid Cancer Trust but they will support you through the diagnosis, surgery, and cancer treatment but endorse BTA and BTF principles so therefore are very limited. I personally have not found them useful at all when it comes to managing 'after cancer care' and day to day stuff but I am sure they can deal with the immediate cancer diagnosis bit very well....They will not entertain NDT....

[ThyroidThora in reply to sorrel89]

Hi Sorrel89,

Thanks for your reply.

I've been on this thyroid cancer journey since February this year and I've gone through the diagnosis, removal and am having follow up care at my hospital but it would be nice to meet other people similar to me to discuss problems etc. I haven't looked at the Butterfly Thyroid Cancer Trust in ages and so will look again to see if there is anything new.

[sorrel89 in reply to ThyroidThora]

Hi, I am many years on ....24 years since my diagnosis...you are free to pm me, I have found great support on some of the American sites and forums too There has been little update on the Butterfly trust....I had a total thyroidectomy with block neck dissection plus 5/6 RAI.Fortunately I have not had any recurrence but I have had lots of other issues due to poor monitoring....but I am doing good now ....take care

[ThyroidThora in reply to sorrel89]

Hi Sorrel89,

Thanks for your reply.

I too found the American sights better and met an online friend through the American thyca website. We've been messaging each other on a regular basis to discuss our care but it would be nice to meet up with someone local.