Monitoring after thyroid removal

Hello Jan,

Thank you for getting in touch with us, and welcome to our online community. My name is Annerose, I’m one of the Cancer Information Nurses here at the Macmillan Cancer Support line.

It sounds like you have been through a lot over the last 2 years Jan, and I understand how this can make you feel anxious and concerned.

Papillary and follicular are the two most common types of thyroid cancers. Surgery to remove the gland is the main treatment.

By removing the gland, and having it closely examined in the laboratory (lab) they would have been able to see the extent to the cancer and with this they would have been able to tell you it is early stages. Your surgeon and team would not tell you this if they would not have confirmation from the lab.

Because your thyroid gland has been removed, you will now need to replace the thyroid hormone your body would naturally produce, to prevent hypothyroidism. This will be by taking medication for life such as Levothyroxine for example.

You mentioned you feeling cold, and tired, and your hair and nails are suffering, this might be a possible side effect of your treatment, and we would recommend you mentioned this to your team or GP.

Sometimes it can take some time to get the levels just right for each individual person and the follow-ups you have will check this.

The british thyroid foundation explain this and the recommended follow up in their guide to thyroid cancer.

They even state that:’ For patients who have had an excellent response to treatment, TSH suppression may only be necessary a short time (less than 12 months) after your treatment.’  

Regular check-ups are part of your ongoing care. These usually depend on the individual situation, such as type and stage of your thyroid cancer.

If you do have any problems or notice new symptoms between appointments, let your doctor or nurse know as soon as possible.

Feeling worried about the cancer coming back is not uncommon. Here you can find information and links to how to cope with anxiety and stress which you might find helpful. You can also ask you GP for a referral to counselling or psychological support if you have not done so already.

You might also find our online HOPE program helpful, it might be worth checking it out.

There is also an online support tool called RESTORE that provides information about things that can be done to help people cope with fatigue and feel more confident managing it. You can register to use the tool here.

We would advise you not to look on the internet or google, the information you can gain from there is not always complete or evidence based, and mostly does not apply to many.

I understand this is easier said than done, if you are looking on the net, than we would advise you look at sites such as Macmillan or Cancer research UK, and ‘The butterfly thyroid cancer trust’, or the ‘British thyroid Foundation’.

Dealing with cancer can be an emotional time and you might find it helpful to read our web pages about getting emotional support. You can also check our webpage to find details of support and information organisations in your area.

An organisation called Maggie’s offers psychological support and support groups for friends and families of people with cancer. They also offer online gentle exercise sessions, art therapy and relaxation sessions.

I hope this has been helpful. Please don’t hesitate to get back in touch with us. Often it is easier to discuss things over the phone. The number to call is 0808 808 0000 and we are open from 8am to 8pm every day. Press option 1 then 3 to speak to a nurse.

Best wishes and take care 

Annerose (Cancer Information Nurse Specialist) 

Ref/ AM/ IY