Screening for thyroid cancer

What is cancer screening?

Screening means testing people for early stages of a disease. This is before they have any symptoms. For screening to be useful the tests:

• need to be reliable at picking up cancers

• overall must do more good than harm to people taking part

• must be something that people are willing to do

Screening tests are not perfect and have some risks. The screening programme should also be good value for money for the NHS.

Do I have a high risk of thyroid cancer?

Thyroid cancer is rare. But some people have a significant family history of thyroid cancer. They may have tests to find out if they have an inherited gene fault. Depending on the results of these tests, some people need surgery to remove their thyroid gland.

A rare gene fault in the RET proto-oncogene increases the risk of developing thyroid cancer over someone's lifetime. This can cause a condition called Multiple Endocrine Neoplasia type 2 (MEN2). People with MEN2 have a have a higher risk of developing certain ​endocrine​ cancers. This includes a type of thyroid cancer called medullary thyroid cancer.

Family history of thyroid cancer

Speak to your GP if you are concerned about your family history of thyroid cancer. Examples of a significant family history could include having:

• two or more close family members diagnosed with thyroid cancer

• a family member who has been diagnosed with a type of thyroid cancer called medullary thyroid cancer

• a family member diagnosed with thyroid cancer at a young age, for instance, under 40 years of age

Depending on your situation, your GP may refer you to a family cancer clinic or genetic clinic for advice.

Screening for a gene fault

At the appointment you will be asked about your family medical history. The specialist will then decide whether a gene fault is likely to run in your family. If this is likely, they will first of all offer testing to any relative who has, or has had, a relevant cancer. Your relative may have a blood test to look for the gene fault. Depending on the result, you may then be offered testing. 

It’s worth taking your time to think carefully about this decision. The specialist at the clinic will discuss genetic testing with you. This will include:

• the possible results and how this may have an impact on you and your family

• information about further care or treatment if this is needed

If you have a gene fault

If you have a fault in the RET gene, the specialist will explain what happens next. Adults and children found to have MEN2 are usually offered surgery to remove their thyroid gland. This prevents medullary thyroid cancer from developing. The age they have this operation depends on their level of risk.

There are some other rare genetic conditions that can increase the risk of developing thyroid cancer. Depending on the type of condition, family members may be offered screening tests, such as an ultrasound of the neck.

Support

The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a patient group which provides information and support about multiple endocrine neoplasia (MEN) and endocrine tumours. They can provide support to patients with medullary thyroid cancer who have the gene fault associated with MEN2.

Visit the AMEND website to find out more.