There are a number of tests and scans that doctors can do as part of your follow up. Find out about them and your follow up appointments.
Why you have follow up appointments
You usually have follow up appointments every few months to check how you are and see whether you have any problems or worries. The appointments also give you the chance to raise any concerns you have about your progress.
After your treatment has finished, your doctor will want you to have regular check ups. These include:
- being examined by your cancer specialist
- blood tests
You won't have all these tests at every visit. But you usually have blood tests and your doctor is likely to examine you at each appointment. They will also ask how you are feeling and whether you have had any symptoms.
You might have several different types of blood tests. For example, a test to check:
- hormone levels if you are taking thyroid hormones
- calcium levels in your blood if your parathyroid glands were removed or damaged during surgery
You might have tests for tumour markers. These measure the levels of substances in the blood that might go up if the cancer comes back. For example, you might have a test for thyroglobulin if you had treatment for papillary or follicular thyroid cancer. Or you have a blood test for calcitonin levels if you had medullary thyroid cancer.
Tumour marker levels can go up before you have any symptoms. So it can be an early warning. Your doctor will arrange other tests, such as a scan, if the levels are abnormal. The levels can go up for other reasons, so it does not always mean that your cancer has come back.
Blood tests are sent to specialist labs and may take up to 4 weeks to come back. So you won't get the results for about a month after the test.
Radioactive iodine scan
You might have a scan about 9 months following radioactive iodine treatment. This is to check that the treatment killed all the thyroid cancer cells.
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. Both of these steps help the cancer cells take up the radioactive iodine.
You might also have an ultrasound scan of your neck to check your lymph glands.
You have more tests if the scans find any abnormal areas that could be thyroid cancer. Or if your thyroglobuline level is raised. You might need more treatment.
You might also have a scan if your doctor is worried that the cancer may have come back.
Dynamic Risk Stratification
Doctors use a combination of an ultrasound and a blood test measuring thyroglobulin. This is done 9 months after your radioiodine treatment.
You have the ultrasound to measure your lymph nodes.
On the same day you have an injection of thyrogen. You have another injection the following day. These injections encourage your thyroid to make thyrogolobulin. You have a blood test done 5 days after the ultrasound to measure the thyrogolobulin.
Your doctor uses the results of the ultrasound and blood test to:
• see if there is any sign of your thyroid cancer coming back
• work out how long you need to be followed up for
• work out how much medication you need to control how much hormones your thyroid produces
How often you have appointments
At first, your check ups are every 4 to 6 months.
You might be seen more often at first if you have anaplastic thyroid cancer. For example, every 2 months.
Gradually they become less frequent. This might be then 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
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.
An anxious time
Many people find their check ups 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 after cancer treatment.
Life after cancer - Amy's story
Amy: My name is Amy and I was diagnosed with thyroid cancer when I was 20.
Things that have helped me in my life after cancer I would say would be the support of my family. I think it does bring you closer. I couldn’t have done it without them.
I think when you do get given the all clear it is a little bit of an anti climax. You have this idea that everyone else expects you to be jumping around for joy.
And of course I was, I was really happy but it was still quite an anxious time and it was for sometime afterwards.
John: It took quite a while for me not to still be worried but I think that has faded.
Amy: With every year that goes by that worry becomes a little less.
John: I don’t worry about it anymore
Amy: When I knew I had to go to an appointment I tried not to think too hard about it.
Actually I was quite grateful for them because I felt like I was still in contact with the team and that they could you know make sure that everything was going in the right way really.
Just go, relax have a nice coffee get yourself a magazine and just take it as it comes.
Because I’d had my thyroid removed I had to take hormone replacement therapy. I thought, this is unfair, I’m 20 years old. I don’t want to have to take medication for the rest of my life.
John: I think that was probably the most difficult time. Amy was feeling lethargic. You were angry at that point.
Amy: As time has gone on the amount of medication that I’ve had to take has been cut down. I now just take three tablets a day which is really no bother at all and I feel absolutely fine.
You don’t necessarily change the day after you’ve been given the all clear but in the years to come you do.
I have a scar on my neck but it’s just part of who I am.
John: Before Amy had cancer she was held back by insecurities. It’s made Amy the person she is today.
Amy: I definitely feel I have been on a journey. At times not always an easy journey but undoubtedly a life changing journey. And I couldn’t be happier than I am now.
Cancer isn’t the end. There are so many positive things to come