Patient-Initiated Follow-Up (PIFU) after treatment for endometrial cancer

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What is this information about?

This leaflet explains the Patient-Initiated Follow-Up (PIFU) pathway following treatment for endometrial cancer.

It includes information about:

• What PIFU means
• Symptoms to look out for
• How to access support if you have concerns
• Annual health assessments
• Health and wellbeing support services

Why have I been given this information?

You have chosen to join the Patient-Initiated Follow-Up (PIFU) programme. PIFU is recommended for patients who:

• Have completed their treatment
• There are no new or unmanaged or unmet negative effects following your cancer treatment, including physical, emotional, practical, financial and spiritual.
• There are no unmanaged side effects of treatment induced menopause including, but not limited to, hot flushes, vaginal or vulval dryness, painful intercourse, recurrent urinary tract infections and increased urinary frequency, insomnia, loss of libido, fatigue – see cancer and menopause for further symptoms.
• All side effects from radiotherapy have been addressed including management with bladder and bowel function, radiotherapy induced vaginal stenosis management and education about vaginal dilators or lymphoedema management.
• Have been informed about the signs and symptoms of cancer recurrence
• Feel confident monitoring their own health
• Know when and how to seek advice if concerns arise

This means you will no longer receive routine follow-up appointments. However, you will continue to have direct access to the specialist team if you have concerns during the next five years.

What does Patient-Initiated Follow-Up mean?

Instead of attending regular hospital appointments, you will monitor your health and contact the team if you develop any symptoms or concerns.

You can contact the Gynaecology Oncology Clinical Nurse Specialist Team directly, and if necessary, you will be offered rapid access back into the service for assessment.

What symptoms should I look out for?

Please contact the team if you experience any of the following symptoms:

Vaginal symptoms

• Vaginal bleeding
• Unusual vaginal discharge
• Bleeding after sexual intercourse

Abdominal or pelvic symptoms

• Abdominal bloating lasting longer than two weeks
• New abdominal or pelvic pain lasting longer than two weeks

General symptoms

• Unexplained weight loss
• Loss of appetite
• Persistent tiredness or feeling unwell

Bladder or bowel symptoms

• Changes in bowel habits lasting longer than two weeks
• Changes in bladder habits lasting longer than two weeks

Other symptoms

• New or persistent breathlessness
• Shortness of breath
• New swelling in one or both legs
• New or worsening back pain

If you are worried about any symptom, even if it is not listed above, please contact the team for advice.

Who should I contact if I have concerns?

What is the Annual Health Needs Assessment?

As part of the PIFU programme, you will be invited to complete an Annual Health Needs Assessment each year for five years.

This assessment helps identify any physical, emotional, or practical concerns that may arise after treatment.

The questionnaire will be sent to you once a year for completion at home.

Once your completed assessment has been received, a member of the team will review it and contact you if any support or advice is needed.

How can I support my health and wellbeing?

Maintaining a healthy lifestyle may help improve overall wellbeing and reduce the risk of cancer recurrence.

This includes:

• Maintaining a healthy weight
• Eating a balanced diet
• Taking part in regular physical activity where possible
• Avoiding smoking
• Limiting alcohol consumption

Many people also benefit from emotional support after cancer treatment. It is normal to experience worries, fears, or uncertainty following a cancer diagnosis.

Support is available to help you adjust to life after treatment.

What support services are available?

Important

Patient-Initiated Follow-Up does not mean you are being discharged from care. You continue to have direct access to specialist support if you develop symptoms or have concerns about your health.

If you are worried about any new symptoms, please contact the Gynaecology Oncology Team promptly for advice.

Support Services: scan the QR Codes

Cancer and Menopause (website with self-help, advice and workshops)

Sources of information:

Endometrial Cancer Personalised Stratified Follow-Up Pathways – Surrey & Sussex Cancer Alliance

British Gynaecological Cancer Society (BGCS) Uterine Cancer Guidelines: Recommendations for Practice