Thyroid cancer


Treating thyroid cancer

The type of treatment your doctor recommends will depend on the type and stage of thyroid cancer you have, your age and your general health.

Active surveillance

Your doctor may recommend active surveillance for papillary thyroid cancer that isn't causing any symptoms and is considered to be low risk. There is good evidence that active surveillance is safe for some small papillary thyroid cancers where there is no sign that the cancer has spread from the thyroid.

Typically, active surveillance involves regular ultrasounds and physical examinations to monitor the cancer. Some people may prefer active surveillance if the possible side effects from treatment would have more impact on their quality of life than the cancer itself. Other people find active surveillance makes them feel anxious and prefer to have surgery immediately.

Active surveillance is usually recommended only for papillary tumours under 10 mm. Surgery can be considered at any stage if you change your mind or if the cancer grows or spreads. If you agree to active surveillance, your doctor will talk to you about the changes to look out for.

Fertility concerns

Many women diagnosed with thyroid cancer are under 40 and are concerned about the impact of treatment on their ability to get pregnant. If having children is important to you, talk to your doctor before starting treatment. Long-term fertility is not usually affected by surgery or radioactive iodine treatment. In the short-term, you may need to delay pregnancy for some months after treatment.

Surgery

Surgery is the most common treatment for thyroid cancer. Before the operation, a member of the surgical team and, in some hospitals, a specialist nurse will talk to you about the operation. This is your opportunity to ask questions and discuss any concerns you have.

You will be given a general anaesthetic and a 5–7 cm cut will be made across your neck. There are two main types of thyroid surgery:

Partial or hemithyroidectomy

Only the affected lobe or section of the thyroid is removed. This is usually performed if the cancer is small and the other lobe of the thyroid looks normal on the ultrasound. Sometimes it is also used to diagnose thyroid cancer if a fine needle aspiration biopsy doesn't provide a clear diagnosis. If thyroid cancer is found after a hemithyroidectomy, you may need further surgery to remove the rest of your thyroid. This will depend on the size and type of cancer, and whether you have nodules in the other thyroid lobe.

"My initial fine needle biopsy results were inconclusive, so I had half of my thyroid removed." – Jenny

Jen's story

"I was diagnosed with a papillary thyroid cancer 10 years ago when I was 31.

"I'd had laryngitis on and off for a while, but as I'm a receptionist I put it down to talking too much. As my husband and I were going overseas for a month, I had it checked out so I could get any prescriptions I needed here. The doctor felt a lump in my neck and sent me for an ultrasound.

"I could tell by the technician's face that something was wrong. He called a doctor, who immediately did a fine needle biopsy. The next day, I was told I had cancer – all from a little lump I couldn't even feel or see.

"My doctor referred me to a specialist who said that as it's a fairly slow-growing cancer, to have my holiday and he'd operate when I returned. A couple of weeks after coming back, I had a total thyroidectomy. I had no real side effects other than a scar, which has faded. I recovered quickly and was back at work after a couple of weeks.

"After the surgery I was put on thyroxine to get my hormones stable. Two months later, I had the radioactive iodine. I was in hospital for two nights while I was radioactive, and then at home I had to follow all the precautionary safety measures, such as sleeping separately from my partner.

"I now have thyroxine once a day in the morning. I was really tired until the dose was right.

"Some people say that thyroid cancer is a good cancer to get. I know that their hearts are in the right place, and yes, it is a "good" cancer because the remission rate is pretty high, but it's still cancer. The diagnosis has reminded me to appreciate the small things in life."

Tell your cancer story.

Total thyroidectomy

The whole thyroid gland (both lobes), including the isthmus, is removed.

Lymph node removal

With either type of thyroid surgery, nearby lymph nodes may also be removed if the cancer has spread to them. This is called a neck dissection. Occasionally, the nodes behind the thyroid are removed as a precautionary measure, even if the cancer doesn't appear to have spread.

Other tissue

In very rare cases, the surgeon removes other tissue near the thyroid that has been affected by the cancer.

After the operation

You will probably stay in hospital for one or two nights to recover from surgery. Your neck wound will be closed with stitches, adhesive strips or small clips. Your nursing team will talk to you about how to care for your surgical wound site once you go home to prevent it becoming infected. Your surgeon may order blood tests during this period to check on your recovery. See what to expect after thyroid surgery below for more information.

Further treatment after surgery

All tissue removed during the surgery is examined for cancer cells by a pathologist. The results will help confirm the type of cancer you have and determine whether you will require further treatment. For some people this may mean more surgery to remove any remaining thyroid tissue. Other people may need thyroid hormone replacement therapy, radioactive iodine treatment or targeted therapy.

What to expect after thyroid surgery

Most people who have thyroid surgery will feel better within 1–2 weeks, but recovery may take longer for some people.

Hoarse voice

Sometimes thyroid surgery affects the nerves to the voice box, which can make your voice sound hoarse or weak. This is often temporary and improves with time. Your singing voice may be affected. This is often temporary, but sometimes it is permanent. Most patients complain their voice gets tired after thyroid surgery, and this is usually temporary.

Sore neck

You will probably feel some pain or discomfort where the cut was made. You will be given pain relief medicines to manage this.

The position you are placed in for surgery can sometimes give you a stiff neck and back. This is temporary, and neck massage and physiotherapy may help loosen the muscles in your neck. You can also try using a triangleshaped pillow to support your neck after surgery and/or ask for painrelieving medicine.

Eating and drinking

Most people are able to eat or drink normally within a few hours after the operation. To help your body recover from surgery, you need to be well nourished. Try to eat small amounts of healthy, nutritious food. For more information, see Nutrition and Cancer or call Cancer Council 13 11 20.

Activity levels

Most people return to their usual activities within a week, but some people need more time to recover. You will most likely need to avoid heavy lifting, vigorous exercise and turning your neck quickly for a couple of weeks after surgery.

Scarring

You will have a horizontal scar on your neck above your collarbone. In most cases, the scar is about 5–7 cm long and is often in a natural skin crease. At first, this scar will look red, but it should fade and become less noticeable with time. Your doctor may recommend using special tape on the scar to help it heal. Keep the area moisturised to help the scar fade more quickly over time. Ask your pharmacist or doctor to recommend a suitable cream.

Mood changes

Changes in hormone levels may affect your mood. If you feel anxious or have panic attacks, let your doctor or nurse know as they may recommend medicines to help. Some people find meditation or relaxation techniques helpful.

Painful swallowing

You will find it painful to swallow for a few days. Try to eat soft foods that are easy to swallow.

Low calcium levels

If surgery affected the parathyroid glands, you may have low blood calcium levels (hypocalcaemia). This may cause headaches and tingling in your hands, feet and lips, as well as muscle cramps.

Your doctor will do blood tests to check your calcium levels, and you may be prescribed vitamin D and/or calcium supplements until your parathyroid glands recover. If the parathyroid glands don't recover, calcium supplements need to be taken permanently. Calcium supplements should be taken at least 2 hours after your thyroid hormone replacement tablets.

Thyroid hormone replacement therapy

Many people who have a partial thyroidectomy won't need thyroid hormone replacement therapy because the remaining lobe will continue to make enough hormones.

After the whole thyroid is removed, your body will no longer produce the hormones that maintain your metabolism, and you will be prescribed a hormone tablet to replace thyroxine (T4).

You will usually start taking hormone replacement tablets while in hospital recovering from the surgery. You will need to take a hormone tablet every day for the rest of your life.

Taking thyroid hormone tablets can have two roles:

Keeping your body's metabolism functioning at a normal healthy rate

Without hormone replacement medicine, your metabolism will slow down and you will develop the symptoms of hypothyroidism, such as depression or weight gain (see more information on symptoms).

Reducing the risk of the cancer coming back

Taking the T4 hormone in tablet form stops your pituitary glands from producing another hormone called thyroid-stimulating hormone (TSH). It is thought that high levels of TSH may cause any thyroid cancer cells remaining after treatment to grow. For this reason, if the doctor thinks the cancer has a medium to high risk of recurring, they will recommend you take a high dose of T4 to reduce the level of TSH. This is known as TSH suppression.

Finding the right dose

You'll be carefully monitored when you start thyroid hormone replacement therapy. The starting dose of thyroxine (T4) is calculated based on your weight. You will have blood tests every 6–8 weeks to help your doctor adjust the dosage until it is right for you. Usually, the initial dose is close to the correct dose and requires only small adjustments.

A small number of people may experience hypothyroidism or hyperthyroidism during the adjustment period. However, once you are taking the right dose, you should not experience side effects.

Tips for taking T4 medicines

  • Store medicines in the fridge to maintain the T4 level in the tablets. If you are travelling, the medicine will last up to 30 days without refrigeration.
  • Take your T4 medicine at the same time every day to get into a routine. Take it on an empty stomach with a glass of water and wait 30 minutes before eating.
  • If you miss a dose, take the missed dose as soon as you remember.
  • Wait 2 hours before taking calcium or iron supplements as these affect the stomach's ability to absorb the T4.
  • Check with your doctor if it's safe to continue taking other medicines or supplements.
  • Tell your doctor if you are pregnant or planning to get pregnant, as you may need to take a higher dose.
  • Don't stop taking the T4 medicine without discussing it with your doctor.

Radioactive iodine treatment

Radioactive iodine (RAI) is a type of radioisotope treatment. It is also known as I131. Radioisotopes are radioactive substances given as a capsule that you swallow. Although RAI spreads through the body, it is only absorbed by thyroid cells or thyroid cancer cells. RAI kills these cells while leaving other body cells unharmed.

You may be given RAI to destroy tiny amounts of remaining cancer cells or healthy thyroid tissue left behind after surgery. It is usually recommended for cancers with a higher risk of coming back after surgery.

Radioactive iodine treatment is suitable for people diagnosed with papillary or follicular thyroid cancer. RAI doesn't work for medullary or anaplastic thyroid cancer because these types do not take up iodine. The radioactive iodine treatment often starts 4–5 weeks or more after surgery to allow your surgical wound time to heal.

If you are pregnant or breastfeeding, you can't have RAI treatment. If you are breastfeeding, in most cases treatment will be delayed until you have weaned your child. Ask your doctor for more information.

Preparing for radioactive iodine treatment

Limiting foods high in iodine

A diet high in iodine makes RAI treatment less effective. You will need to start avoiding highiodine foods two weeks before treatment. This includes foods such as seafood, iodised table salt and sushi. Your health care team can give you more information.

Raising TSH levels

For RAI treatment to work, you need a high level of TSH in your body. There are two ways to increase TSH levels:

  • You can stop taking your thyroid hormone replacement medicine for a few weeks. You will have a blood test before RAI treatment to check that the TSH levels have risen enough.
  • You may be prescribed injections of a synthetic type of TSH called recombinant human thyroid-stimulating hormone (rhTSH) or Thyrogen. You will need an injection once a day for the two days before RAI treatment. This enables you to continue taking your thyroid hormone replacement medicine.

The option recommended for you will depend on your stage of disease and what is suitable for you. For more details, see follow-up appointments and talk to your endocrinologist.

Having radioactive iodine treatment

You will be admitted to hospital on the day of the radioactive iodine treatment. You may be given anti-nausea medicine before the RAI capsule. RAI treatment will make you radioactive for a few days, and you will need to stay in hospital during this time. See below for an outline of the safety measures that will be in place while you are having treatment.

Once the radiation has dropped to a safe level, you will be able to go home. If you had Thyrogen injections, this is usually within 36–48 hours. It may be a day longer if you stopped taking your thyroid hormone replacement medicine.

Safety precautions during radioactive iodine treatment

Your medical team, family members and friends will have to take precautions to limit their exposure to radiation.

In hospital

Safety measures vary at each hospital and the staff looking after you will discuss the specific details with you before treatment starts. Safety measures usually include:

  • keeping you in an isolated, shielded room
  • not allowing or restricting visitors to the room – particularly children and pregnant women
  • if visitors are allowed, limiting the time they can stay in the room and asking them to stay 2–3 metres away from you
  • measuring your radiation levels with an instrument called a Geiger counter – this is usually done daily
  • wearing gloves to clean up body fluids (e.g. urine, sweat, saliva and blood), and leftover food and drink.
At home

When you go home, you may have to continue following some safety measures for a few days.

Your medical team will discuss any safety measures with you before treatment. These precautions usually include:

  • sleeping alone
  • washing your clothing separately
  • preparing your own food
  • taking care with body fluids for a certain period of time
  • sitting down to urinate and putting the lid down and flushing the toilet several times after use.

Following these safety measures may make you feel frightened and lonely. Discuss any concerns you have with your doctors, nurses or a counsellor. It's a good idea to take something to hospital to occupy your time, e.g. a book.

After radioactive iodine treatment

You will have a full body radioisotope scan (see follow-up appointments) to detect if any thyroid cancer cells are left in the body. It is normal to see an area of RAI uptake on the scan, due to small amounts of healthy thyroid tissue remaining in your neck after surgery. The RAI will take several months to destroy this tissue. The scan may also show if cancer has spread to your lymph nodes or other areas of your body.

Side effects of radioactive iodine treatment

Usually, being temporarily radioactive is the only major side effect of RAI treatment. You may also have a dry mouth, or have taste and smell changes for a few weeks after treatment. Some people will have ongoing problems with swelling and pain in their salivary glands. Other side effects, such as tiredness, are often caused by thyroid hormone withdrawal, but these side effects will improve when your thyroid hormone levels return to normal. In some cases, RAI can increase the risk of developing a second cancer. Talk to your doctor for more details.

Managing side effects of RAI

  • Drink lots of water to help the RAI treatment pass out of your body faster. This also reduces the bladder's exposure to radiation.
  • Ask for medicine if the side effects continue.
  • If you or your partner want to have a baby after RAI treatment, talk to your doctor. You may have to use barrier contraception such as condoms for six months or more (see sexuality and intimacy).

Targeted therapy

Targeted therapy drugs can get inside cancer cells and block certain enzymes that tell the cancer cells to grow. The most common type of targeted therapy drugs used for thyroid cancer are tyrosine kinase inhibitors (TKIs). These drugs block the function of a group of enzymes called tyrosine kinases, which tell cancer cells to grow, multiply and spread.

If you have advanced thyroid cancer that hasn't responded to radioactive iodine treatment you may be treated with a TKI called lenvatinib. This drug is given as a capsule, which you will take daily at home.

Other TKIs may be available on clinical trials. Talk with your doctor about the latest developments and whether you are a suitable candidate.

Side effects of targeted therapy

Ask your doctor what side effects you may experience and how long your treatment will last. Potential side effects of lenvatinib include diarrhoea, skin rash, bleeding and high blood pressure. In some people, lenvatinib can affect the way the heart and kidneys work. Lenvatinib can also cause a skin reaction on the palms and soles, causing tenderness, tingling and blisters.

It is important to discuss any side effects with your doctor immediately. If left untreated, some symptoms can become lifethreatening. Your doctor will explain what to watch out for, and will monitor you throughout treatment.

For more information on treatments and managing side effects, see Understanding Surgery, Understanding Chemotherapy and Understanding Radiation Therapy.

External beam radiation therapy

External beam radiation therapy (also known as radiotherapy) is the use of high-energy x-rays or electron beams to kill or damage cancer cells. Radiation is delivered precisely to the affected area, which reduces treatment time and side effects.

Most people diagnosed with thyroid cancer do not need external beam radiation therapy. In a small number of cases, it may be given in the following circumstances:

  • after surgery and radioactive iodine treatment if the cancer
  • has not been completely removed or if there is a high risk of the cancer coming back (recurrence)
  • as palliative treatment to relieve symptoms if the cancer has spread to nearby tissue or structures
  • to help control medullary or anaplastic thyroid cancer because these types do not respond to RAI.

Planning session

Before the treatment starts, you will have a planning session. The radiation therapist will take CT scans to determine the exact area to be treated, and may make small marks or tattoos on your skin. This ensures the same part of your body is targeted during each treatment session.

You may be fitted for a plastic mask to wear during treatment. This will help you stay still so that the radiation is targeted at the same area of your neck during each session. You can see and breathe through the mask, but it may feel strange and uncomfortable at first. The radiation therapy team can help you manage this.

Having treatment

Radiation therapy is usually given five days a week over several weeks. Treatment sessions usually take about 10 minutes, but it will take longer to position the machine correctly.

Side effects of external beam radiation therapy

Many people will develop temporary side effects during treatment. Common side effects include feeling tired, difficulty swallowing, sore throat, dry mouth, and red, dry, itchy, sore or ulcerated skin. Most of these will disappear within a few weeks or months. Your treatment team can help you prevent or manage any side effects.

Chemotherapy

Chemotherapy is the use of drugs to kill or slow the growth of cancer cells. While chemotherapy is not often used to treat thyroid cancer, it may sometimes be used to treat advanced thyroid cancer that is not responding to radioactive iodine treatment. It may also be used to treat anaplastic thyroid cancer.

The drugs are usually given intravenously (injection into a vein) or as tablets. You will probably have several treatment sessions over a few weeks – your medical team will work out the schedule.

Side effects of chemotherapy

The side effects of chemotherapy vary greatly for each person depending on the drugs that are used. Common side effects include fatigue, nausea, appetite loss, diarrhoea, hair loss, mouth sores and anaemia. You may also be more likely to catch infections.

Most side effects are temporary and your doctor will talk to you about ways to prevent or reduce them. You could be prescribed medicines to treat the side effects, be given a different type of drug, or your doctor may recommend a break from treatment.

Palliative treatment

Palliative treatment aims to relieve symptoms and improve people's quality of life without trying to cure the disease. It may be beneficial for people at any stage of advanced thyroid cancer.

The treatment you are offered will be tailored to your individual needs. It may include radiation therapy, chemotherapy, targeted therapy or other medicines.

For more information see Understanding Palliative Care and Living with Advanced Cancer, or call Cancer Council 13 11 20.

Most people with thyroid cancer respond well to treatment and do not need to access palliative care services.

Follow-up appointments

After your treatment, you will need regular check-ups to confirm that the cancer hasn't come back and to manage any long-term side effects of treatment. How often you will need to see your doctor will depend on the type of cancer and which treatments you had. You may have the following tests:

Blood tests

If you have been treated for papillary or follicular thyroid cancer, you will have blood tests to check the levels of thyroglobulin (Tg). This protein is made by normal thyroid tissue and it may also be made by papillary or follicular thyroid cancer cells. After a total thyroidectomy you should have little or no Tg in your body, but levels will rise if the cancer comes back. If Tg is found in your blood, your doctor may suggest having some scans. A small number of people have Tg antibodies. This causes no harm but makes it hard to accurately measure Tg. The antibodies tend to fade after RAI treatment.

For medullary thyroid cancer, blood levels of calcitonin and carcinoembryonic antigen (CEA), which is a protein produced by some cancer cells, will be measured periodically.

Blood tests are also done regularly to check if you are on the right dose of thyroid hormone replacement. When it's stable, thyroid function blood tests are needed only every 6–12 months.

Neck ultrasound

An ultrasound is used to see if any cancer is left or has come back in the area where the thyroid was removed. It also checks for cancer in the lymph nodes around the neck.

Radioisotope scan

This test is used to check if there are any thyroid cancer cells remaining in your body after treatment. You may need to raise your TSH levels before the scan – for more details see below and talk to your doctor.

A small amount of radioactive dye (such as iodine or technetium) is injected into a vein in your arm. After about 20 minutes, you will be asked to lie under a machine called a gamma camera, which takes a scan.

The camera measures the amount of radioactive dye taken up by any remaining thyroid tissue or other areas of disease. A radioisotope scan is painless and causes few side effects. After the scan, you will not be radioactive and it is safe to be with others.

If your doctor needs more information, or if cancer cells are found elsewhere in your body, you may also need a CT or PET scan.

Before follow-up tests

Usually the Tg blood test is done while you are taking thyroid hormone replacement medicines. Sometimes the doctor may want to measure a stimulated Tg. This is done after you have stopped taking thyroid hormone medicines for a period of time to raise the TSH level as this is the time when Tg is most accurate. For more details see below or talk to your doctor.

Newly developed Tg tests are more sensitive. Most people will not need to withdraw from thyroid hormone replacement medicines.

Ways to raise TSH levels for accurate test results

Your doctor will give you instructions about how to prepare for your blood test or radioisotope scan.

Option 1 Stop taking thyroid hormone replacement medicines

  • Prepare to stop taking your T4 hormone replacement medicine about 2–6 weeks before your follow-up appointment.
  • Once you stop, your thyroid hormone levels will decrease and you may experience symptoms of hypothyroidism.
  • Some people find it difficult to cope with this, while others don't notice any side effects.
  • These symptoms can be improved by taking T3 hormone replacement instead of T4.
  • You can take T3 until 10–14 days before the scan. After this time, all thyroid hormone replacement therapy is stopped.

Option 2 Have rhTSH (Thyrogen) injections

  • rhTSH is a synthetic drug that is a copy of the TSH produced by your body.
  • It is given as two injections, 24 hours apart.
  • You will have the radioactive iodine scan and/or blood test about 48–72 hours after your second rhTSH injection.
  • You don't have to stop taking your thyroid hormone medicine.
  • rhTSH has few side effects, but some people experience headaches, nausea or weakness for a short time. Talk to your doctor for more information.

Key points

  • Surgery is the most common and effective treatment for thyroid cancer.
  • There are different types of surgery for thyroid cancer. The operation you have depends on where the cancer is located, the type and size of the cancer, and whether it has spread to nearby lymph nodes.
  • You may have a partial thyroidectomy or your whole thyroid gland may be removed (total thyroidectomy).
  • Nearby lymph nodes may also be removed (neck dissection).
  • RAI treatment is taken as a capsule. You will need to stay in hospital for 2–3 days in an isolated room to safely contain the radioactivity.
  • You will need to prepare for RAI treatment by limiting foods high in iodine and increasing the level of TSH in your body.
  • Targeted therapy (tyrosine kinase inhibitors) may be used if the cancer no longer responds to RAI treatment.
  • Radiation therapy may be used as an additional treatment after surgery and RAI.
  • After a total thyroidectomy, you will need to take thyroid hormone replacement medicine for the rest of your life.
  • Your doctor may recommend radioactive iodine (RAI) treatment after surgery to kill any remaining thyroid tissue or cancer cells.
  • Chemotherapy may sometimes be used to treat advanced thyroid cancer that has not responded to RAI treatment.
  • Chemotherapy may be used in combination with radiation therapy to treat anaplastic thyroid cancer.

Expert content reviewers:

Dr Mark Pace, Endocrinologist, Royal Melbourne Hospital, VIC; Dr Roger Allison, Radiation Oncologist, Royal Brisbane and Women's Hospital, QLD; Dr Gabrielle Cehic, Nuclear Medicine Physician, Flinders Medical Centre and Queen Elizabeth Hospital, SA; Leisa Davey, Consumer; Ilona Lillington, A/Clinical Nurse Consultant Thyroid, Royal Brisbane and Women's Hospital, QLD; A/Prof Julie Miller, Specialist Endocrine Surgeon and Head of Thyroid/Endocrine Tumour Group, Royal Melbourne Hospital, VIC; Chris Sibthorpe, 13 11 20 Consultant, Cancer Council Queensland; Carly Smith, A/Clinical Nurse Consultant Thyroid, Royal Brisbane and Women's Hospital, QLD.

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