Newly Diagnosed Medullary Thyroid Cancer Awaiting Staging

Helllo

Welcome to the Thyroid forum.

I am sorry that you have not yet had a reply to your post but sometimes it can just take a little longer for someone who has had a similar diagnosis to see it and offer support. 

I am sorry to hear that you have had a diagnosis of medullary thyroid cancer. I hope that you are recovering ok from your surgery. I know with my own cancer it can feel tough to wait for the post op results and everything can feel a bit in limbo until you know whether any follow up treatment is needed. 

In the meantime do give the Support Line a call if it would help to talk things over with someone. They are there from 8am-8pm daily. 

I hope your staging results come back very soon and in the meantime we are here if you need us.

Jane

Hi, I had a total thyroidectomy and neck dissection in May with having MTC. Unfortunately my tumour was very big and stuck to the windpipe so the surgery did take a lot longer than expected. In my opinion the surgery has been the easiest part. I still have some numbness on the right side, aches and pains, and still have that sensation that something’s stuck in my throat,which is just uncomfortable but no problem with eating or drinking. Also suffering with brain fog and tiredness but I rest when I need to and it’s getting better.

i found it difficult to find any information or anyone that’s been or going through meduallry thyroid cancer because of how rare it is, if you do have any questions I’ll be happy to answer 

Hello,

I was diagnosed with MTC 2 years ago at 50. I had a very large tumour that I can now see in photos dating back 25 years. It was removed 2 weeks after diagnosis, along with half of my thyroid, then the other half removed 5 weeks to the day later. I too found it difficult to find out about peoples experiences with MTC hence why I have popped back on here to see if anyone needs any support.

I am on levothyroxine. I would say it took me 18 months to get back completely to a new normal. I was just so tired for at least a year. I had a very croaky voice at first but it has recovered. My singing voice is still terrible!!

I have regular calcitonin blood tests and TSH tests and although I gained a stone in weight after the second op, I have lost it again and I am back to pre-op weight. I believe exercising got me through the recovery really well. The surgery team were incredible and I was told repeatedly not to stop moving. In fact my surgeon said "I'm not operating on your arms or legs... Keep moving".

Happy to support anyone who has a Medullary diagnosis, you are not alone. X