Prostate Cancer - Patient Initiated Follow Up (PIFU)

Who is the leaflet for? What is its aim?

The Urology department at Addenbrooke’s is piloting an initiative to try and improve the way we follow up our patients following surgery for prostate cancer. This leaflet is for patients who have had surgery to remove their prostate and who are eligible for patient initiated follow-up.

How will I be followed up after my treatment for prostate cancer?

After having treatment you will have a follow up review with your clinical team. You will then be transferred to nurse led follow up. If your condition remains stable and if suitable, you can then be moved to a Patient initiated Follow-up Pathway (PIFU) where you will self-manage by having PSA tests regularly to monitor your condition.

You may also receive an invitation to complete an Electronic Holistic Needs Assessment (EHNA) by a cancer navigator ahead of your appointment. This is a short questionnaire that helps us to understand what’s important to you at this stage in your pathway and help you find the right support.

What is a PIFU/Self-Management Pathway?

This is a form of follow up being used within Cambridge University Hospitals for patients who have had surgery to remove their prostate following a cancer diagnosis. Some traditional routine appointments have been replaced with a system called Patient initiated Follow- up where men who are well following surgery do not have to attend the hospital for appointments. This has been designed to be more convenient for you, saving time and travel costs.

Will I still have access to the Urology team?

Yes. You can still call the Prostate Cancer specialist nursing team on 01223 216897 or your Navigator on 01223 216861, if you have any queries or concerns. You will be provided with information that will include signs and symptoms to look out for and we would always encourage you to call us if you have concerns.

If the clinical team feel that it would be appropriate for you to come back to clinic, an appointment will be made for you.

Will I have all the same tests?

Yes. Unless otherwise stated, you need to continue with regular PSA blood test, as advised by the clinical team. If your results are abnormal, you will be reviewed by the clinical team.

Who will organise the PSA test for me?

You will need to organise the blood test for the PSA at your GP. Please ask them to pass the results to you so you can keep a record of it in the PSA follow up booklet or use track my PSA online tool.

What do I do if I can’t get PSA testing done at GP surgery?

Please contact your specialist nurse to discuss this. You may need to attend one of the walk in blood test sites run by Addenbrooke’s Hospital.

What do I do if my PSA is increased and my follow up is not for another 3-6 months?

You are advised to contact your specialist nurse if your PSA blood test has breached the threshold set for you. This will be specific to you based on what type of treatment you have had or type of monitoring pathway you are on.

Signs and Symptoms to report:

The following is a reminder of the signs and symptoms to keep in mind when treating patients who have had prostate cancer. These symptoms could indicate a return or spread of the disease and need further investigation.

• Stiffness or frequent soreness in areas such as the lower back, hips and thighs
• Swelling in the legs or pain in the pelvic region
• Bone pain that does not stop
• Bone fractures and spinal compression
• Increased urinary symptoms.
• New or worsening incontinence.
• Unexplained weight loss

How will it work?

Instead of having a follow up appointment booked at a specific time in the future, your clinical team will order a patient initiated follow up (PIFU) appointment for you.

The PIFU order will be for a specific time frame – for example 12 months. If you have any concerns during that time, we encourage you to contact your specialist nurse to discuss before your next scheduled appointment. If you do not contact the team within the time frame set an appointment will be automatically generated for you after the time has elapsed.

Will I always be followed up in this manner?

Not necessarily. If we need to see you so that we can undertake a clinical examination we will ask you to attend the clinic.

What if I do not want or need a PIFU follow up appointment?

The choice is entirely yours. You do not have to be followed up in this way.

Contacts/ Further information

Urology Prostate Cancer Specialist Nurses - 01223216897

Oncology Prostate Cancer Specialist Nurses - 01223 257049

You will be asked to leave a short message on our answer phone. Please include:

• Your name
• Your contact telephone number
• Your hospital number

The answer phone will be checked regularly from Monday to Friday between 9.00 and 15.30

You will be telephoned back within 24-48 of leaving your message. Please be reminded this is not an emergency line.

References/ Sources of evidence

NICE Prostate Cancer: Diagnosis and Management CG175 Prostate cancer: diagnosis and management (opens in a new tab)

East Of England Cancer Alliance guideline

Patient Centred Follow-Up (PCFU) for patients with Prostate Cancer (opens in a new tab)