Any information about metastasised Medullary Thyroid Cancer?

Hello JMer

Thank you for getting in touch with us, and welcome to our online community. My name is Annerose I’m one of the Cancer Information Nurses here at the Macmillan Cancer Support line.

Getting the information about the cancer having metastasized but without a precise location can be very difficult to hear and having to wait for the next scan or test to show something different can be hard to cope with indeed.

Many people find waiting for tests and follow ups quite worrying. It can help to tell someone close to you, sharing your worries can mean they don’t seem so overwhelming. I can see you have joined our thyroid cancer forum already, and I hope you will find it useful. There are other ways you can get help and support from Macmillan too here.

You mentioned in your post that you have slowly rising Calcitonin levels, on the Butterfly.org website it is explained in one of their information leaflets that:

‘Patients with higher than normal calcitonin levels that remain the same over a period of time, or increase slowly do not necessarily need further investigation or treatment. This is because calcitonin alone is not an indication of a growing tumour and scans are unlikely to identify a site of disease outside of the neck unless calcitonin levels are significantly high.’

It continues that further tests might be necessary and:

‘This may be followed by treatment with more surgery, radiotherapy or other radiation treatments (MIBG/Octreotide)’.

MTC, as you are already aware of can spread locally to the neck, lymphnodes, to lung, bones or liver. Unfortunately, it is not possible to predict if, when or where it will be found.

The National Cancer Institute have good information on the different stages of Thyroid cancer including the areas it can spread to and different treatment options according to stage. You will see that this included watchful waiting.

Unfortunately I could not find any trials about when or where this type of cancer might progress, so far most of them are about specific treatments and their outcome.

I hope this has been helpful, but please don’t hesitate to get back in touch if you need any further information or support.

Best wishes and take care 

Annerose (Cancer Information Nurse Specialist) 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref/ CF