This information explains ways in which you can continue to access support and advice about your health following endometrial cancer. If you have any concerns or questions that are not answered in this leaflet, please speak to your clinical nurse specialist (CNS) or your GP surgery. 

What is patient initiated follow-up?

Patient initiated follow-up (PIFU) puts you in control of your follow-up appointment. Instead of being offered regular visits, you can make an appointment to see us if you have worries or concerns following your consultation.

You will be given ‘open access’ to the clinic and you would be able to request a follow up appointment during the time period as specified by your consultant, which means that if you are concerned about your condition or your medication, you can contact us and you will receive a telephone or face-to-face consultation.

The reason we offer follow-up this way is because most patients do not benefit from having a regular outpatient follow-up and many patients find the follow-up visits to the hospital cause a lot of anxiety and unnecessary disruption. By offering appointment bookings in this way, we hope to be able to respond to your needs more quickly. 

Will I need to have any regular tests?

Most patients will not need any routine tests or scans related to their cancer or cancer treatment. You will not need to have regular smear tests. We will advise you and your GP if there are any regular tests you may need. Your GP will then arrange them as needed.

The benefits

The main advantage is that you will not have to attend routine follow-up appointments in the hospital even when you are not experiencing any symptoms. Many patients have told us that these appointments often make them anxious and can delay them reporting any worrying symptoms if a routine clinic appointment is already scheduled.

Risks and side-effects

Some patients worry that stopping regular follow-up appointments may cause their cancer to go unnoticed if it comes back. However, patients tend to identify most recurrences themselves in-between appointments. It has been proven that endometrial cancer recurrence is unlikely to be picked up by clinical examination alone if a patient has no worrying symptoms. If you have any concerns, you will be able to contact your clinical nurse specialist (CNS) directly.

Patient initiated follow-up alternatives

If you have specific concerns or health-related issues that make supported self management follow-up unsuitable for you, you can have a traditional follow-up appointment in the clinic. Your doctor and CNS will discuss this with you in more detail.

How it works

Once you have finished your treatment for endometrial cancer, you will have a consultation with a consultant four weeks after your surgery and an ‘end of treatment’ clinic appointment with your CNS two weeks later. During these appointments, your healthcare team will talk to you about:

  • Your diagnosis.
  • Your treatment and the possible side-effects you might experience.
  • Signs and symptoms to look out for and report.
  • How to contact the team.
  • The process the team will follow if you need to come back to the clinic at any time in the future.
  • How the team will keep your GP informed throughout your follow-up.

After your end of treatment clinic appointment, you will be able to contact your CNS when you feel you need to.

If you experience any of the following symptoms, you must report this to your CNS straight away:

  • Vaginal bleeding
  • Worsening or persistent abdominal (tummy) pain
  • Changes in bowel or bladder habits
  • Unexplained weight loss
  • Loss of appetite
  • New shortness of breath or chest pain
  • Persistent bone pain

You should also contact your CNS if you:

  • Develop any new symptoms.
  • Experience any of your original signs or symptoms
  • Have any concerns about managing your health and wellbeing.