Follow up for thyroid cancer

Why you have follow up appointments

You usually have follow up appointments to check how you are. And to see whether you have any problems or worries. The appointments also give you the chance to raise any concerns you have about your progress.

How often you have appointments

Your doctor uses the results of your blood tests and scans to:

• work out how long you need to be followed up for

• work out how much medication you need

• check that there is no sign of cancer

Your appointments may be every few months to begin with and then every six months, or every year.

You might be seen more often if you have anaplastic thyroid cancer. For example, every 2 months.

Gradually the appointments will become less frequent. They might be only once a year. How long you are followed up for depends on the chances (risk) of your cancer coming back.

Your doctor will follow you up for:

• at least 5 years if your cancer is a low risk • at least 10 years if your cancer is between a low and high risk (intermediate) • life if your cancer is a high risk

Your appointments may be with your specialist in hospital at the beginning, and with your GP later on.

Contact your doctor or specialist nurse if you have any concerns. You should also contact them if you notice any new symptoms between appointments. You don’t have to wait until your next visit.

What happens at your appointment

The doctor will ask how you are recovering after your treatment and if you have any side effects. You can talk to the doctor about any concerns or problems you have.

Your doctor checks that there are no signs of cancer. They are likely to examine you and arrange for you to have some blood tests. You might have an ultrasound of your neck.

You may have more tests or scans if your doctor feels these are necessary.

Blood tests you might have

You might have several different types of blood tests. These are to check:

• hormone levels if you are taking thyroid hormones

• calcium levels if your surgeon removed or damaged your parathyroid glands

• tumour markers (thyroglobulin or calcitonin)

Tumour markers

​Tumour markers​ measure the levels of substances in the blood that might go up if thyroid cancer comes back. Tumour marker levels can go up before you have any symptoms. But the levels can go up for other reasons too. So it does not always mean that your cancer has come back. Your doctor will arrange other tests, such as a scan, if the levels are abnormal.

Tumour markers for thyroid cancer include:

• thyroglobulin for papillary or follicular thyroid cancer

• calcitonin for medullary thyroid cancer.

You have a blood test and they send the blood sample to a specialist lab. The results may take up to 4 weeks to come back. This can be a worrying time. It might help to let friends and family know and get what support you can at this time.

Scans you might have

Ultrasound

You might have an ultrasound scan of your neck. If you had surgery to remove your thyroid, this is to check that there are no new areas of cancer. You might also have this scan to check the lymph glands in your neck.

Radioactive iodine scan

You might have a radioactive iodine scan after radioactive iodine treatment. It is a scan of your whole body. It shows where there are thyroid cells taking up radioactive iodine. It can show up if the cancer has spread.

Before this scan, your doctor might ask you to start a low iodine diet and to stop taking your thyroxine hormone tablets for about 3 to 4 weeks. Or alternatively, a few days before the test you might have an injection of a hormone called recombinant human thyroid stimulating hormone. This is to help any cancer cells take up the radioactive iodine so that they show on the scan.

Between appointments

Contact your doctor or specialist nurse if you have any concerns between appointments. You should also contact them if you notice any new symptoms. You don’t have to wait until your next visit.

Many people find their follow up appointments quite worrying. A hospital appointment can bring back any anxiety you had about your cancer.

It can help to tell someone close to you how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Many people find it helpful to have counselling during or after cancer treatment.

Read about counselling and how to find a counsellor

You can also find people to share experiences with by using our online forum, Cancer Chat.

Find out more at Cancer Chat

Life after cancer - Amy's story