ENT - Information for patients who have been diagnosed with Thyroid Cancer

At the time you are told that you have Thyroid Cancer you will be introduced to a head and Neck/Thyroid Cancer nurse specialist who will be available for your support and to give advice throughout your treatment.

Specialist nurse/Key worker details
Monday to Friday

Kate Hindley
0161 206 3186
Kate.Hindley@nca.nhs.uk

Dawn Ann Hulmes
0161 206 8207
Ann.hulmes@nca.nhs.uk

Background

This leaflet is for those patients who have recently been diagnosed as suffering from thyroid cancer.

What is my Thyroid and what does it do?

The thyroid gland sits in the neck across the front of the windpipe (Trachea); it looks like a butterfly with a left and right lobe.

The thyroid gland is essential to life, and it produces two main thyroid hormones called T3 and T4. The main hormone T4 and is also known as Thyroxine (or Levothyroxine). The T3 hormone is also called Liothyronine. These hormones control the body’s metabolic rate and are essential for your wellbeing.

What causes Thyroid Cancer?

In the majority of cases the cause of thyroid cancer is not known, although for a small number of people previous radiation treatment to the neck, or a history of thyroid cancer in the family can play a part.

How common is Thyroid Cancer?

Thyroid cancer is rare.

What types of Thyroid Cancer are there?

• Papillary thyroid cancer (PTC)
• Follicular thyroid cancer (FTC)
• Medullary thyroid cancer (MTC)
• Thyroid lymphoma
• Anaplastic thyroid cancer

Most thyroid cancers are of either papillary or follicular type, and are together called ‘differentiated Thyroid cancer’. These account for over 80% of thyroid cancers.

What is the prognosis (outlook) if I have Thyroid Cancer?

In general terms the outlook is excellent and all people diagnosed with thyroid cancer, around 90% will be cured.

For some groups with low risk disease, up to 98% will be cured. You should ask your thyroid surgeon to explain what they feel is the chance of cure in your own case.

What treatment should I be having for my Thyroid Cancer?

There may be two important parts of treatment for your thyroid cancer: first is surgery, and the second is radioiodine treatment. Some early cancers will be treated by surgery alone and this may be sufficient to cure the condition. This is particularly true for early cancers in the younger patient. In other cases you may require both surgery and radioiodine treatment.

Surgery for Thyroid Cancer

There are a number of surgical options and this will be discussed with you, your treatment plan will have been discussed and agreed in advance at the Thyroid cancer multidisciplinary team meeting (MDT).

The surgical options are:

1. Thyroid lobectomy - this involves the removal of half (or one ‘lobe’) of the thyroid that contains the cancer. This is usually called a hemi thyroidectomy.
2. Total thyroidectomy – in this operation, the surgeon will remove all of your thyroid tissue, and you will have to go on life- long thyroid hormone replacement.

Your surgeon may, at the same time, also remove the lymph glands in the centre of your neck if indicated.

Who will do my Thyroid Cancer surgery?

Your surgery will only be done by your local surgeon who is also a member of the thyroid cancer multidisciplinary team.

What happens after my Thyroid surgery?

Depending upon the type or extent of surgery, you may be in hospital for less than a day, or it may be for 1-4 days, this will be explained to you prior to your admission.

If you are having a hemithyroidectomy ‘single lobe’ removed, often you are able to go home the same day, or the next day. If you are having a total thyroidectomy and lymph node removal, you may need to stay longer.

Once discharged home, your care will be re-discussed at the next thyroid MDT meeting, and based on the result of the histology report (the type, stage and extent of your cancer), the MDT may then decide to suggest the following:

• Do nothing further as the tumour has been removed/cured
• Recommend that the second lobe is removed (completion Total thyroidectomy)
• Recommend that radioiodine treatment is given (approx. 6-10 weeks following total thyroidectomy at Christie hospital)
• Very occasionally recommend that external beam irradiation is given (Radiotherapy). All radioiodine and other treatments are done at the Christie Hospital under the care of a thyroid oncologist (thyroid cancer specialist). There is usually a gap of 6-10 weeks to give you time to recover fully from your surgery before any further oncology treatment is given

Will I have to take tablets after my surgery?

You may require some pain relieving tablets for a few days, but generally for no more than one week. The pain after thyroid surgery is usually mild. If your surgeon has removed just one thyroid lobe you may not need any additional tablets. However if both parts of your thyroid has been removed you will be started on thyroid hormone replacement. To begin with you may be started on short acting form of thyroid hormone called Levothyroxine (T3) you should continue to take this until you are told to stop by either the thyroid oncologist or your own thyroid surgeon.

Long term thyroid hormone treatment is started in two situations:

• If you don’t need radioiodine treatment, or
• After your radioiodine treatment has been completed

The long term thyroid hormone is called Thyroxine or levothyroxine (T4), and the usual dose is 100-150micrograms taken once daily. You will have to take this for life. When the entire thyroid has been removed, some patients may require treatment with calcium or vitamin D tablets. For most patients this is temporary, but some may need to take them long term, this will be explained to you at the time if needed.

What are the risks of my Thyroid surgery?

Your surgery will be explained in detail by your own surgeon, but you need to know the following risks:

• You will have a scar on the front of the neck which usually fades with time. l If half your thyroid (hemithyroidectomy) has been removed you have a 1 in 5 lifetime risk of needing thyroid hormone replacement and should have a thyroid blood test approximately yearly by GP
• There is a small risk that the nerve to your voice box can be damaged during surgery and this will result in permanently hoarse voice for 1 in 100 people
• There is a small risk that you may have bleeding after the operation, and need to go back to theatre as an emergency
• If your entire thyroid has been removed (total thyroidectomy) then you will require life-long thyroid hormone replacement (Levothyroxine). There is a risk of low calcium levels after the operation, due to damage or bruising of the small glands next to the thyroid, called the parathyroid glands, and you may need to take calcium supplements to maintain adequate calcium levels. One third of the patients need calcium supplements temporally, for a few days or a few weeks, but only 3 in 100 need lifelong replacement
• Wound infection is rare
• Very rarely the nerves to the voice box can be damaged on both sides. If this happens, then you may have to have an emergency tracheostomy where a breathing tube is inserted into the windpipe or trachea. This may be permanent or temporary

What if my voice is hoarse after the surgery?

In most cases this is due to some bruising of the nerve and in many cases it will get better. However, a bruised nerve can take as long as six months to recover fully.

Radioiodine treatment

The most common treatment will consist of radioiodine therapy (a form of radiation treatment), called ‘iodine-131’. This is used because the thyroid gland and most thyroid cancer cells take up iodine and so the radiation treatment attacks the thyroid tissue and cancer cells directly.

As mentioned, not all patients will require this treatment and the need for radioactive iodine (RAI) will be determined at the thyroid MDT meeting. If required, the treatment is usually given approx. 6-12 weeks after your surgery. You will be referred to the thyroid oncologist at the Christie hospital for a consultation and they will explain the treatment in further detail. (Radioactive iodine (RAI) leaflet can be found in patients leaflet section of the Christies Hospital website).

What about my long-term care?

After your surgery and possibly radioiodine treatment (if needed) your long-term care will be divided between your local thyroid surgeon and/or your thyroid oncologist at the Christie hospital. Your surgeon will advise you on how that care is to be divided.

There are a number of important things to know about your long-term care:

• If you have had a hemi thyroidectomy you should have a blood test of your thyroid function checked once a year and you will have regular follow up checks with your surgeon 
• If you have had a total thyroidectomy then you must have a regular blood test called a thyroglobulin test
• If you have had a total thyroidectomy, then you should have your thyroid function blood test done at each visit. This is to check your degree of ‘TSH suppression’
• Even though your thyroid may have been removed, your surgeon may need to perform periodic ultrasound scans of the neck and needle tests called FNAC which means ‘fine needle aspiration cytology’. This is most likely in the first year
• If your cancer was Medullary thyroid cancer then you should have a regular blood test of something called Calcitonin

Why is thyroglobulin important?

Thyroglobulin is a normal protein that is produced by the thyroid, but it also produced by some thyroid cancers. It can be measured in the blood.

When the entire thyroid has been removed the blood levels of thyroglobulin should be very low, or undetectable, your surgeon will explain your blood tests.

What is TSH suppression and why is it important?

TSH means ‘Thyroid stimulating hormone’ and is a hormone produced by the brain. It is a hormone that switches the normal thyroid off and on. If the TSH is high the thyroid works harder and produces more thyroid hormones T3 and T4. When the thyroid has been removed, high levels of TSH could encourage thyroid cancer cells to grow, in some types of thyroid cancer, so it is important to keep the level TSH low.

The way this is done is by making sure you have enough thyroid hormone replacement (thyroxine) medication, to keep the T4 level in your blood at the top end of the normal range. This usually means having a slightly higher dose of levothyroxine than would normally be needed for people who have their thyroid removed for a non-cancerous reason. This will reduce the chance of cancer coming back.

Your surgeon or oncologist will be able to tell you if you need TSH suppression, and to what degree this may be necessary, but the degree of TSH suppression is controlled by adjusting the dose of thyroid hormone you are taking.

TSH suppression is not necessary in all cases and neither is it required in those with medullary thyroid cancer.

What is Calcitonin?

Calcitonin is another hormone produced by the thyroid. It has a small role in the control of blood calcium and is produced by the ‘C Cells’ or ‘Para follicular cells ‘of the thyroid (two names that mean the same thing).

If you have developed medullary thyroid cancer, the tumour develops in these cells which may also produce calcitonin. In some patients with medullary cancer the blood level of calcitonin may be very high.

Once you have had your thyroid removed for medullary cancer your calcitonin level should be undetectable or low. If your tumour comes back again then your blood calcitonin levels may rise again and so this is another blood test that would suggest the cancer may have returned. It is only of use in this type of thyroid cancer.

Further information/support

The British Thyroid Association
www.british-thyroid-association.org

British Thyroid Foundation
www.btf-thyroid.org.uk

The Butterfly Thyroid Cancer Trust
www.butterfly.org.uk
01207 545 469

Salford Cancer Macmillan Information & Support Centre
0161 206 1455

Macmillan Cancer line
0808 808 20220

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