Follow up for thyroid cancer
After treatment for thyroid cancer you have regular follow up appointments. Your doctor will ask how you are and check that there are no signs of cancer. The number of appointments you have depends upon the type and stage of your thyroid cancer. It will also depend upon your response to your treatment.
Your appointments may be with your specialist in hospital at the beginning, and with your GP later on.
Why you have follow up appointments
You usually have follow up appointments 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.
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
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?
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.
The doctor is 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 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
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
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 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 during or after cancer treatment.
You can also find people to share experiences with by using our online forum, CancerChat.
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 some time 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
