Medullary Thyroid Cancer and rising calcitonin levels

Hi CarrieCat and welcome to the Online Community. I have a different cancer to you so I'm sorry I can't comment, hopefully some of the members here will be along to answer you soon.

Consultant's watch and wait plans are really difficult for a stressed patient to accept. I feel for you.

If you call the Macmillan Support number shown below they'll be able to connect you with a nurse who hopefully offer you some support and reassurance.

Sending you all the best, B xx

Hi CarrieCat 

I'm sorry to hear that you are and your husband are going through such a worrying time. I had a medullary microcarcinoma that was found incidentally following a partial thyroidectomy. My Calcitonin levels were, and have remained undetectable.This was a real learning curve for me as I had never heard of MTC before. I found this site invaluable.There aren't too many people on here with MTC but I think some of their names are Minouche,Dogrose and smiley6 so I help they are able to give you some advice from their experiences. 

I'm sorry that I'm not able to help more but I hope one of them sees your post and replies.

Kind regards

Wooz

Hi! 

I am so sorry you’re going through this! I also have medullary thyroid cancer which was initially misdiagnosed as papillary and was put on a watch and wait plan by my consultant after my first surgery. Over 2 years and lots on calcitonin tests, pet scans and ultrasounds it took to 2 years to have a visible tumour that could be removed I have FNAs on all tumours and one came back and nothing but infact was MTC. I’ve just had more surgery and now again we’re on a watch and wait again for next calcitonin tests so I really can sympathise with you!