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Cancer of the lining of the womb, low risk – patient-initiated follow-up

Read our guide below to help you understand the patient-initiated follow-up for those with low risk cancer of the lining of the womb.

You can also download a PDF version of this patient information by following the link on the right.

What is patient-initiated follow up (PIFU)?

It’s a method of follow-up that enables you to manage your own follow-up appointments. This will provide you with direct access to a clinician tailored to your specific needs if you develop new symptoms.

Based on the stage of cancer of the womb that you have been diagnosed with (low risk endometrial cancer), evidence suggests that there is no added benefit from routine follow-up appointments. In fact, most of the recurrences (cancer coming back) are recognised when patients report symptoms. This pathway will enable you to take control of your own care and get help when you need. It also offers several additional benefits like reducing unnecessary hospital appointments and spending less time travelling to hospitals. Through PIFU, we aim to respond to your needs as quickly as possible while avoiding unnecessary ‘routine’ hospital appointments.

You have been assessed by a team of expert doctors including your own Gynaecology consultant and found to be eligible for PIFU. The information on this page will give you further information on when you need to seek medical advice and what happens then.

When should I contact the team for advice?

You should contact the Gynae Oncology Clinical Nurse Specialist (CNS) team if you experience any of the following symptoms:

  • Vaginal bleeding or discharge
  • Persistent problems passing urine or blood in the urine, if your GP has already ruled out a urine infection (UTI).
  • Changes in bowel habits – new or alternating constipation or diarrhoea.
  • Unexplained weight loss
  • Tummy pain
  • Pelvic pain

These problems may have several different causes, but it is always advisable to contact us for advice.

Who do I contact if I have concerns?

If you develop any worrying symptoms or have any cancer related concerns, then you should contact your Clinical Nurse Specialist (CNS) Monday to Friday, 9am to 4pm.

Telephone: 01296838240

Leave a message with your name and date of birth and your Clinical Nurse Specialist will phone you to discuss your concerns.

What happens after I contact my team for advice?

The Clinical Nurse Specialist will discuss your concerns with you and together you will decide whether you need further investigations or referral for examination. It might be that further investigations can be done by your GP. It might be that you need blood tests or scans, or an appointment with your specialist consultant for an examination. Often you may find that reassurance is all that is needed. If further tests are required, the aim will be to do these within two weeks.

General thoughts and feelings about PIFU

You may have mixed feelings about no longer needing to be seen regularly by your cancer team. Some women feel relieved that they can now start getting their lives back to normal; others may be concerned about what could happen in the future and are anxious about losing contact with their specialist team.

These feelings are all normal. This pathway enables you to have direct and quick access to a member of your specialist team if you need their help or expertise.

You may find these websites useful

Supportive programmes for after treatment

Support groups

Buckinghamshire Healthcare NHS Trust – Cancer Care and Haematology, Lavender girls. Wycombe and Stoke Mandeville hospitals.

01296 838240

Maggies Oxford, Below the Belt

01865 751882, oxford@maggiescentres.org

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