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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.

How does this benefit me?

Based on the stage of cancer of the womb, that you’ve been diagnosed with (low risk endometrial cancer), evidence suggests that there’s no added benefit from routine follow-up appointments.

Most of the recurrences (cancer coming back) are recognised when patients report symptoms.

Patient-initiated follow-up will enable you to take control of your own care and get help when you need it. It also offers several additional benefits like reducing
unnecessary hospital appointments and spending less time travelling to hospitals.

Through patient-initiated follow-up, we aim to respond to your needs as quickly as possible while avoiding unnecessary β€˜routine’ hospital appointments.

A team of expert doctors including your own gynaecology consultant have assessed you as suitable for patient-initiated follow-up. The information below tells you when you need to get medical advice and what happens then.

When should I contact the team for advice?

Contact the Gynae Oncology Clinical Nurse Specialist (CNS) team if you get:

  • 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.

We’ll give you a trigger card to help you decide when you should contact us. The card fits in a purse or wallet so that you can conveniently refer to it.

The trigger card highlights any symptoms that you should look out for and how to contact the PIFU team for help. These problems may have several different causes, but we advise you 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, call your Clinical Nurse Specialist (CNS) on 01296 838240, Monday to Friday, 9am to 4pm.

The clinical nurse specialist will call you back 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’ll decide whether you need further investigations or referral for examination. It might be that your GP can do further investigations.

You may need blood tests or scans, or an appointment with your specialist consultant for an examination. Often you may find that reassurance is all that’s needed. Further tests, if needed will happen within two weeks.

General thoughts and feeling about patient-initiated follow-up

You may have mixed feelings about your cancer team no longer needing to see you regularly. 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 feel 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.

Useful links

Early Menopause
The Eve Appeal
Macmillan Cancer Support

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