Overview

Follow-up is what happens after your breast cancer treatment is finished. The follow-up treatment will be carefully planned for you. This is called personalised follow-up (PFU).

Personalised follow-up (PFU)

The aim of PFU is to support you after treatment with a structured follow-up plan. Your follow-up is planned by your breast care team and can include:

• imaging scans  
• hormone therapy
• information on how to check your breasts
• support for your health and wellbeing
• contact with your breast care team

PFU is sometimes called personalised stratified follow-up (PSFU), patient initiated follow-up (PIFU), open access follow-up (OAFU), remote monitoring (RM), or supported self-management (SSM).

Follow-up hormone therapy

Some people have hormone therapy as part of their treatment. This can last 5 years or more, and your doctor will plan this with you. After 5 years, you might need to come back to the team to review your treatment.

For example, you might:

• stop having hormone therapy
• continue this treatment
• need a different type of hormone therapy

If you are on hormone therapy you might also need to have a bone density (DEXA) scan during your follow-up. Your doctor will explain this scan and your GP will arrange it.

Imaging scans

You will have imaging scans (breast X-rays) as part of your PFU. These show if the breast cancer has come back. You will have yearly scans until the age of 50, or for 5 years if you're over 50 years old. Your imaging scan appointment will be sent to you via MyChart or post.

If you have had both of your breasts removed, you do not need imaging scans. You do not need other routine scans or appointments either, but you will stay on PFU for 5 years.

The type of imaging you have might change each year, which is completely normal. You might need a blood test before some imaging scans.

If you have been referred for a CEM (Contrast Enhanced Mammogram), you’ll have your blood test (eGFR) at least 2 weeks before your appointment so we have the result ready when you go for your imaging appointment.

More information will be sent to you each year as a reminder.

Imaging results

After your imaging scans, you will get your results as a letter through MyChart or in the post if everything is normal. If there are any concerns, your breast care team will contact you.

The effects of treatment can sometimes make it difficult for us to read the results. This means you might have to come back to the hospital to have more tests or scans. If this happens, we will phone you. It is important to make sure the hospital has your correct address and phone number.

If you do not get your results within 4 to 12 weeks after having your imaging scan, contact us through the breast clinical nurse specialist (CNS) helpline, phone: 020 7188 0869.

Follow-up treatment after 5 years

If you have had both of your breasts removed, after 5 years, your care will be moved from the hospital team to your GP.  

When to contact your breast care team

You can contact your breast care team on the clinical nurse specialist (CNS) helpline at any time during your follow-up, phone: 020 7188 0869. You can contact them to talk about any new symptoms, treatment side effects, or concerns you have.

You will be given a clinic appointment if the nurse thinks it’s needed. Or your nurse might decide you need a review with a doctor.

Nurse-led personalised care

After treatment, you will be invited to an end of treatment clinic to talk with your nurse about your treatment and follow-up care. This is called nurse-led personalised care. You will fill in a holistic needs assessment (HNA), to help your team create a care plan. The HNA makes sure your needs are met, and you have all the support you need.

You will get a treatment summary. This explains the treatment you have had, any possible side effects, signs of your cancer coming back, and information about medicine you are taking. We will send a copy of your treatment summary to your GP.

Your nurse will support you to become breast aware, so that you can check your breasts (if you have remaining breast tissue). They can also give you health and wellbeing support.

You will be given information about a course run by Breast Cancer Now called ‘Moving Forwards’ which aims to support you during your follow-up. You can also find information on the Breast Cancer Now.

Quality of life survey

NHS England will send you a survey, either through email or post, 18 months after your diagnosis. The survey will ask you to tell us how cancer has changed your quality of life.

Measuring quality of life is about understanding the impact of cancer, and how well you’re living after diagnosis. This includes emotional or social wellbeing, finances, and ongoing physical problems, such as tiredness and pain.

Completing the survey will help us to improve how we support people living with cancer.

Useful information and support

Your breast care team will give you information on the support available to you. Your GP might also be able to tell you about support in your local area.

• Breast Cancer Now has information and support for people diagnosed with breast cancer. They also offer support from breast cancer nurses.
• Cancer Wellbeing London has information about health and wellbeing workshops, and support across London.
• Citizens Advice gives free and confidential information and advice to help people with financial, legal and other issues.
• Dimbleby Cancer Care offers information and support to anyone affected by cancer. They are based in in the Welcome Village at Guy’s Cancer Centre, and the Dimbleby Macmillan Support Centre at Queen Mary’s Hospital.
• Macmillan Cancer Support has practical and emotional information and support, including financial information and support with work.