Overview

This information explains the personalised follow-up (PFU) programme, which supports you after you have finished treatment for thyroid cancer.

If you have any questions, please speak to your thyroid cancer clinical nurse specialist.

What the PFU programme involves

Follow-up means:

• what happens after you finish your cancer treatment
• how we support you

Your follow-up is part of your personalised cancer care. Personalised cancer care is about giving you care and support that are important to you. This means that your care after treatment is called personalised follow-up or PFU. 

You might also hear your follow-up being called:

• personalised stratified follow-up (PSFU)
• patient initiated follow-up (PIFU)
• open access follow-up (OAFU)
• supported self-management (SSM)

These are all ways to describe your planned care after treatment for thyroid cancer.

Your thyroid team has carefully planned your follow-up care. You can contact the thyroid cancer clinical nurse specialist (CNS) at any time during your follow-up if you have any concerns.

Your follow-up includes support from an end of treatment clinic with your clinical nurse specialist.

You have follow-up care for 5 years after thyroid cancer treatment. After this 5-year-period, we send you back to the care of your GP.

How PFU works

You have a follow-up appointment 2 weeks or 6 weeks after your surgery, depending on which type of operation you had. At this point, we move you onto the PFU programme.

We invite you to an end of treatment clinic. At this clinic, you can talk about your follow-up care with your nurse.

This section explains what happens at your end of treatment appointment.

Completing an end of treatment holistic needs assessment (HNA)

This is a questionnaire that asks you about your needs and what matters to you. Your needs might be:

• physical (affecting your body)
• practical
• emotional (affecting your mind and how you feel)
• social

The HNA helps your team to make a care plan. It makes sure that your needs are met and that you have all the support you need.

Read more about holistic needs assessments on the Macmillan Cancer Support website.

Getting a treatment summary

This is a letter covering:

• the treatment that you had
• any possible side effects, signs and symptoms that might suggest the cancer has returned
• any new medicines that you take

Your nurse answers any questions that you may have about your treatment summary letter and recovery.

Read more about your treatment summary.

We share the treatment summary with your GP and you can keep a copy. Please make sure that we have the correct details for your GP.

Tests during your follow-up care

After you have finished your treatment, you need to have 2 main types of tests in the next 5 years. You have tests:

• every 6 months for the first 2 years
• every year for the next 3 years

We send you a letter when you are due to have a test.

Thyroid function test

A thyroid function test is a blood test that checks:

• how much thyroid hormone is in your blood
• how much of a protein called thyroglobulin is in your blood (as this can sometimes be a sign of thyroid cancer)

Ultrasound scan of the neck

We do an ultrasound scan of your neck to check:

• the remaining half of your thyroid gland called the lobe (if you had surgery called a lobectomy to remove the other half)
• the area where your thyroid was (if you had surgery called a total thyroidectomy to remove the whole thyroid gland)
• the lymph nodes (small glands that help to fight infection) in your neck

We look at the scan for any signs that the cancer has returned.

Test results

You get your test results in a letter through the post if everything is OK. If there are any concerns, your thyroid care team phones you.

It is important that we have your correct address and phone number. If you do not get your results 4 weeks after having your tests, please call our thyroid cancer clinical nurse specialist helpline.

Concerning symptoms

If you have any symptoms that worry you or last longer than a few days, it is important to contact us. Having these symptoms does not mean that the cancer has returned.

When you call our helpline, a thyroid cancer clinical nurse specialist talks to you about your symptoms. If you need a review, we will book you an appointment at our surgical follow-up clinic within 2 weeks.

When to contact a GP

You might still get other illnesses or health conditions that are not related to cancer. You need to continue to see a GP for any concerns about your health. If needed, your GP can contact us and arrange for a member of the hospital team to see you.

The PFU programme continues until 5 years after your treatment finishes. Your GP will then refer you to your local hospital for any concerning symptoms that might be related to cancer.

Quality of life survey

Measuring quality of life helps us to understand the impact of cancer, and how well people are living after their diagnosis. This includes people's:

• emotional or social wellbeing
• finances
• ongoing physical problems, such as tiredness and pain

You get a survey from NHS England electronically or through the post 18 months after your diagnosis. This survey is part of an England-wide project.

The survey tells us how cancer might have changed your quality of life. This helps us improve how we support people to live as well as possible after a cancer diagnosis. It can also help you to talk about the support that you need with your team.

Useful information and support

The organisations listed in this section can give you more information about thyroid cancer and support with the condition.

Dimbleby Cancer Care

Dimbleby Cancer Care provides cancer support services for Guy's and St Thomas'. There is a drop-in information area staffed by specialist nurses. We offer complementary therapies, psychological support and benefits advice for patients and carers.

We are in the Welcome Village of the Cancer Centre at Guy's and the Dimbleby Macmillan Support Centre at Queen Mary's Hospital.

Phone: 020 7188 5918
Email: [email protected]

Other organisations

Cancer Research UK has information for anyone affected by cancer.
Phone: 0808 800 4040 (Monday to Friday, 9am to 5pm)

Cancer Care Map helps you to find cancer support services in your local area.

Cancer Wellbeing London has information about health and wellbeing workshops, and support across London.

Citizens Advice gives free, confidential information and advice to help people with financial, legal and other issues.

Macmillan Cancer Support offers practical and emotional information and support online or by phone. This includes financial information and support with work. 
Phone: 0808 808 00 00 (7 days a week, 8am to 8pm)

Shine Cancer Support offers support for young adults in their 20s, 30s and 40s.

Trekstock offers support for young adults in their 20s or 30s who are affected by cancer.

Working With Cancer helps employees, employers, self-employed people, job seekers and carers to manage cancer and work. It gives coaching, training and advice.