Thyroid UK
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Anaplastic Thyroid Cancer

My sister passed 6th March with a rare and aggressive form of cancer called Anaplastic Thyroid Cancer.

On 4th February she was suffering with a painfuk throat and goiter but had to wait till she was seen by the consultant. On 25th February I drove her to Bournemouth hospital as she couldn't swallow fluids. She was admitted to a specialist unit and passed away 9 days later surrounded by family.

We have just found out this is hereditary and I am concerned if there funding within the NHS to check the children and grandchildren. I don't are for myself as I have another rare condition GPA.

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Oh crikey!

That was quick. I'm in ever so sorry for your loss. 💞

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I'm very, very sorry to hear about your sister. As you say it's a very rare cancer. I didn't know it was hereditary and I don't know if there is any way of checking for hereditary factors. It sounds like there are multiple factors involved with the development of anaplastic cancer including environmental influences so it might not be as simple as genetic testing but I'm not a scientist or doctor.

This website says that Anaplastic thyroid cancer is rarely hereditary which is reassuring. thyroidcancer.com/thyroid-c...

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My condolences to you and your family and particularly for the loss of your sister and we cannot look back to what should have or could have been done by the professionals.

I really would investigate if your whole family can be tested and I would visit your MP to ask his advice if your doctor isn't forthcoming in his answers.

My family doctor ticked me off in no uncertain terms when I suggested could my 10 year old have the beginning of Rheumatoid arthritis as it ran in the family (she had been complaining for a long time and I had taken her to doctors). Unfortunately his decision not to investigate juvenile RA has caused my daugher to be so seriously disabled and has gone through many, many ops. The doctor angrily told me not to 'put ideas into her head'. Unfortunately there's no going back.

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Sincere condolences on the loss of your sister. Ouch!

Please DO care for yourself. I have now read about ATC and GPA. As Shaws stated, 'we cannot look back', but please do look into having the family tested. In the meantime, take each day at a time and take care of YOU.

Thoughts and prayers/

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So sorry that you have lost your sister. When I had my thyroid out I looked up various forms of thyroid cancers and your sister type is very rare and aggressive but I don't think that it is hereditary.

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It is worth putting the request for testing in writing to the GP’s surgeries. If they don’t offer help then write to the CCG’s, then their MP’s. My husband recently had to have some heart checks done after his brother was diagnosed with a hereditary disease. Thankfully our GP organised everything very quickly, the tests have all been done, we are just waiting for one result.

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Wow so sorry for ur loss!!!

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