Medullary Thyroid Cancer and rising calcitonin levels

I’m looking for advice about rising calcitonin levels - my husband had surgery in 2012 and 2013 for medullary thyroid cancer that had spread to lymph nodes 

after initial drop in calcitonin after second surgery the levels have risen steadily ever since - latest was a jump of 300 to 930 - but as it doesn’t double in the required time frame we have been told everything is ok 

he just had another FNA and results were clear, but no one is explaining why the calcitonin is raised if there is no cancer 

im getting increasingly worried about the Consultants watch and wait plan … 

Is there a thyroid specialist Macmillan nurse we can talk to for some clarification / reassurance ?? We can’t seem to get the nurse at the hospital to return calls 

My husband is so stressed and I feel so helpless Cry

I’m so worried Cry 

  • Hi 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

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    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • 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


  • 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!