Association for
Multiple Endocrine
Neoplasia Disorders

Symptoms of MTC

In most cases, patients may first notice a lump in the neck which has not been present before.  Other symptoms may include:

• difficulty swallowing due to a thyroid tumour pressing on your gullet
• breathing difficulties due to a thyroid tumour pressing on your windpipe
• a hoarse voice that doesn’t improve over time
• feelings of pressure or discomfort in your neck.

Some patients with advanced MTC may suffer with diarrhoea and/or flushing caused by a larger-than-normal quantity of hormone (calcitonin) being made by the tumour.

Diagnosing MTC

A diagnosis of MTC is usually made using:

• blood tests to measure levels of a hormone called calcitonin and a protein called CEA,
• an ultrasound scan, and
• a Fine Needle Aspiration (FNA) biopsy.

Treating MTC

MTC usually develops over a number of years but can spread early on to nearby lymph nodes. If the thyroid and nearby lymph nodes are removed by surgery while the cancer is still contained within the thyroid (total thyroidectomy and central lymph node dissection), a patient is usually cured.  Surgery is best performed by an expert surgeon who does a large number of these surgeries each year.  You can now look at who these surgeons are via the British Association for Endocrine & Thyroid Surgeons (BAETS) audit data.

After removal of a thyroid gland, a medicine called levothyroxine will need to be taken for life.  This replaces the hormones that the thyroid would make and is generally well tolerated.

If, after surgery, calcitonin levels are still raised, this may mean that the cancer has spread (become metastatic) or has not been completely removed, and so further surgery and newer therapies may be used to control it.  Metastatic MTC rarely responds well to regular chemotherapy or radiation treatments which means that early diagnosis is essential. Nevertheless, it is usually slow growing and may often be managed effectively and without symptoms for many years.

Further Reading

For further detailed information on Medullary thyroid cancer (MTC) and its treatment, please read the AMEND Patient information Book which was produced with the assistance of the AMEND Medical Advisory Team. We recommend that you discuss the contents of this book with your specialist – it is not for use in self-diagnosis, and not all of the information it contains may be relevant to you.

Author: Jo Grey, AMEND CEO, with the help of the AMEND Medical Advisory Team

We are very grateful to Drs Daniel Morganstein and Kate Newbold from the Royal Marsden Hospital for giving up their time on the evening of Wednesday 19th November, 2025, to participate in our live webinar on sporadic MTC.  Dr Morganstein provides an overview of diagnosis and management of MTC with an explanation of genetics, and Dr Newbold explains the current landscape of treatments for metastatic MTC.

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