Patient Initiated Follow-Up (PIFU) for patients with lymphoma

A guide to supported self-management for patients with a lymphoma diagnosis, from the Haemato-oncology Specialist Nurse Team

You have been referred to Patient Initiated Follow-Up (PIFU), as you have either:

With PIFU, instead of having regular follow-up clinic appointments, you can contact your clinical nurse specialist to discuss any worries or concerns you may have.

This leaflet will help you decide when or if to contact your clinical nurse specialist for advice.

When should I call?

Lymphoma can present in many ways. Call the Cancer Care Line and speak to your clinical nurse specialist if you experience any of the following.

What are the benefits of PIFU?

Please remember that you are still under the care of Haematology, and you can discuss any concerns you have with your nurse specialist at any time.

What is supported self-management?

Another term for Patient Initiated Follow-Up is supported self-management.

Some patients are on Active Surveillance (also known as ‘Watch and Wait’) for a slowly progressing lymphoma (low grade). These can sometimes take many years to progress, and some never need treatment. Supported self-management puts you in control. You are able to call your clinical nurse specialist directly to discuss your concerns. We can book you an appointment if you need one.

What happens when I contact my clinical nurse specialist?

Please call your clinical nurse specialist via the Cancer Care Line. A member of staff will answer the phone, and book you the next available appointment for your clinical nurse specialist to call you back (usually within 24 hours).

When you speak to your clinical nurse specialist, they will discuss your concerns with you and they may recommend one of the following.

Use this time to ask any questions or raise concerns.

I'm feeling more emotional than usual, is this normal?

Yes. It is normal to feel emotional for a while after your treatment has ended, and recovery can take time. You can call your clinical nurse specialist to discuss anything that is worrying you, such as:

I'm always anxious that my lymphoma may return

It is natural to feel anxious that your lymphoma will return. We recognise that this can make you feel very uncertain about the future and lead to difficulties in ‘getting on with life’. Some people find it useful to have further support in dealing with these feelings. Please call the Cancer Care Line if you feel that you would benefit from some extra help or reassurance.

Further information and support resources

Contact details

Please call your clinical nurse specialist via the Cancer Care Line. A member of staff will answer the phone, and book you the next available appointment for your clinical nurse specialist to call you back (usually within 24 hours).