Anaplastic Thyroid Cancer

[Cara Voller]

Hi,

This question is asked on behalf of Sharon.


A UK charity specialising in rare cancers recommended I post in this forum as a close relative has had a recent diagnosis of Poorly Differentiated Anaplastic Thyroid Cancer in Belfast, Northern Ireland, he's currently receiving treatment in an NHS specialist Cancer Centre

History
71 year old male, 2 years ago robotic radial prostectomy in Royal Marsden otherwise very active
No history BP/Diabetes/Heart episodes
Occupation: retired teacher, travelling until last month very active and well

Suddenly unwell in Dec '11 with winter vomiting flu, associated weight loss and fatigue
Referred to ENT from GP visit with raised supraclavicular lymph node
Diagnosed cancer 28th Dec from FNA biopsy, Chest CT revealed clear lungs, large thyroid mass
Quickly progressing symptoms of compromised airway and difficulty swallowing
Admitted to hospital 3rd Jan, commenced oral steroids and pain relief for shoulder pain
9th Jan First MDT review at specialist ENT centre suspect anaplastic thyroid cancer due to clinical behaviour
12th Jan More invasive lymph biopsy
16th Jan Commenced 3 weeks of radiotherapy, showing signs of SVC compression with face and neck tissue swelling
21st Jan Less facial swelling and first signs of response
30th Reducing dose of steroids, no pain medication, discussing discharge with hospital team and possible future chemotherapy if indicated
Walking and talking throughout, fatigued in general, sleeping poorly

Further information is available

My Request
I'm confident the treatment and course of action the medical team here are providing are world class, the Drs have been professional and communicated well throughout, given I understand this is a rare and fast progressing condition the following questions arise

1. Where is the best place to go to for information on this condition ? given there appears to be very little
2. Are there any Thyroid specialists with a specific interest in this condition and how best do I engage them?
3. Is anyone researching or trialling new techniques or drugs with this condition, nationally or internationally (the DRs have confirmed no trials are taking place in Belfast)

Apologies in advance if theres any duplication in requesting information as I've been referred to a few places from the supportive charities. I am aware there is a register in Cardiff.

Thanks

[Dr Petros Perros]

I already know about this unfortunate patient with anaplastic thyroid cancer through BTF and Butterfly thyroid cancer trust. We put out a request to the thyroid cancer clinicians in the UK asking if anyone is involved in any clinical trials. There are a couple but they are still in the setting up stage, not ready to recruit. There are a few recruiting outside the UK. If you do a search on the EUDRICT website and put anaplastic thyroid cancer as the search terms they come up. Leading experts in the UK are Dr UK Mallick (Newcastle), Dr K Newbold (Marsden). Outside the UK Professosr M Schlumberger (Paris), professor F Pacini (Sienna). Professor I Hay (Mayo clinic USA).

Unfortunately the outlook is extremely poor and sadly I don't think it will make a substantial difference.