Information for patients
This leaflet can be made available in other formats including large print, CD and Braille and in languages other than English, upon request.
This leaflet will explain what will happen after you have completed your treatment.
You will not be seen regularly anymore at the hospital but the team are still there for you if you need them, as is your GP.
If your clinician thinks a Patient Initiated Follow-Up (PIFU) could be right for you, it will be discussed and offered to you. Please remember that PIFU will not be suitable for every patient.
What is a PIFU Appointment?
A patient initiated follow-up or PIFU when abbreviated, allows you to arrange a follow-up gynaecology appointment for the condition you were seen for when you need it, rather than at a time set by the hospital. For new gynaecological concerns, or if you are feeling unwell, your GP will remain your first point of contact.
What are the advantages of PIFU?
We understand that attending an outpatient follow-up appointment at a date dictated by the hospital can cause unnecessary anxiety, especially if your condition is stable and you do not have something specific to discuss. Your condition may flare up before or after a hospital scheduled follow-up appointment, meaning that you are not being seen when you really need to be. PIFU puts you in control of making an appointment and means it is based on need instead of being at a routine interval. By reducing unnecessary follow-up appointments, PIFU ensures that those needing access to our services are seen sooner due to shorter waiting lists.
It has been proven that if womb cancer does come back, many patients will notice the symptoms themselves rather than it being picked up by a doctor or nurse. Therefore, if you notice any symptoms, book an appointment straight away!
Some women delay reporting symptoms to their nurse or doctor because they wait for their routine appointments. With PIFU in place, these symptoms are reported straight away rather than waiting for routine appointments.
When should I call the Gynaecology Clinical Nurse Specialist (CNS) team?
You should call the Gynaecology CNS team (refer to Contact Number section) if you notice any of the following symptoms for more than a few days, for no known reason:
• Vaginal bleeding or vaginal discharge
• Bleeding after sexual intercourse
• Abdominal pain and/or bloating that does not go away
• Pelvic pain
• Back pain
• Weight loss, not associated with dieting or exercise
• Loss of appetite or feeling full quickly
• Feeling very tired and unwell
• Leg swelling which can be early signs of lymphoedema
• Persistent change in bowel habit i.e., ongoing constipation or diarrhoea
• Persistent problems when passing urine
• Shortness of breath or persistent cough.
Although there are many possible causes of these problems, it is always a good idea to consult with a doctor or nurse.
What do I do if I cannot stop worrying about the cancer coming back?
The possibility of cancer coming back is a common concern. Keep in mind that it is not the same for every woman. Your medical team’s recommended treatment can ensure that your personal risk is minimised as much as possible.
Feeling emotional for a period of time after treatment ends is normal, and recovery can be a long process. If you have any concerns including low mood, depression, feelings of isolation, sexual concerns, money worries, or problems related to your diagnosis or treatment, you can call your cancer nurse specialist to discuss them.
Your thoughts and feelings about PIFU
Everyone will have different feelings when they stop seeing their cancer team. Some will feel relief that they can now start getting their lives back to ‘normal’. Others may continue to be concerned about what could happen in the future and remain anxious about losing contact with their specialist team. These feelings are all perfectly normal and your cancer team will always be available for you if you need their help and expertise.
What happens when I contact my CNS?
If or when you contact your Clinical Nurse Specialist, they will discuss your concerns with you and then:
• Make a clinic appointment to see you at the hospital.
• Ask you to make an appointment with your GP.
• Explain and reassure you if no further action is needed.
We want you to feel supported on PIFU and will contact you before you are discharged from our service. We will also discuss and remind you of the signs and symptoms to look out for. If you have any questions, please ask a member of the team.
Our cancer care coordinator will also arrange to call you around 6 months after initiating your PIFU just to check if you have any concerns you wish to discuss, and sign post you to any relevant services.
Contact Numbers
In the first instance if you have any concerns, you should contact your GP. Alternatively, you can contact:
Clinical Nurse Specialist
Telephone: 01642 624081
Monday to Friday, 8:00 am to 4:00 pm
Cancer Care Coordinator
Telephone: 01642 624116
Monday to Friday, 8:00 am to 4:00 pm
Consultant’s Secretary
North Tees Telephone: 01642 624213
Hartlepool Telephone: 01429 522267
Monday to Friday, 8:00 am to 4:00 pm
Further Information
Macmillan Cancer Support
Telephone: 0808 808 00 00
Monday to Friday, 9:00 am to 8:00 pm
Or visit www.macmillan.org.uk
Your local Macmillan Cancer Information centre is located at:
North Tees Hospital
Telephone: 01642 383041
Monday to Friday, 9:30 am to 4:30 pm
Hartlepool Hospital
Telephone: 01429 522201
Wednesday, 9:30 am to 4:30 pm
Comments, concerns, compliments or complaints
Patient Experience Team (PET)
North Tees and Hartlepool NHS Foundation Trust would like your feedback. If you would like to share your experience about your care and treatment or on behalf of a patient, please contact The Patient Experience Team who will help you to do this.
This service is based at the University Hospital of North Tees but also covers the University Hospital of Hartlepool, our community hospitals and community health services.
North Tees and Hartlepool NHS Foundation Trust
Telephone: 01642 624719
Freephone: 0800 092 0084
Email: [email protected]
Monday to Friday, 9:30 am to 4:00 pm
Out of Hours
If you wish to speak to a senior member of Trust staff, please contact the hospital switchboard.
Telephone: 01642 617617
Leaflet Reference: PI032 – Version 01
Date for Review: 19th January 2029