Patient-initiated follow-up (PIFU) for women with endometrial cancer

Your doctor has recommended patient-initiated follow-up (PIFU) after your treatment for endometrial (uterine or womb) cancer. This page explains how PIFU works. If you have any further questions about the follow-up, please speak to your healthcare team. 

What is PIFU?

PIFU is a type of follow-up care for patients who have completed treatment for endometrial cancer. Instead of having routine hospital appointments, you will be able to contact your specialist team when you need to. This means you will not have to attend an appointment if you are feeling well and don’t have any symptoms.  

PIFU will continue for three to five years after your treatment is finished.  

What are the benefits of PIFU?

The main benefit is that you don’t need to attend routine hospital appointments. Many patients feel anxious about these appointments. Some may also delay reporting any worrying symptoms if their next appointment is coming up soon. With PIFU, you can contact your team whenever you feel the need. 

Are there any risks?

Some people worry that without regular hospital check-ups, a cancer recurrence could be missed. But research shows that endometrial cancer is unlikely to be detected by clinical examination alone if you don’t have any symptoms. Most patients identify recurrences themselves between appointments. If you are worried about your symptoms, you can always contact your clinical nurse specialist (CNS).  

How will it work for me?

After you finish your treatment for endometrial cancer, you will have an appointment with your surgeon, and an ‘end of treatment’ appointment with your CNS. During these appointments, your healthcare team will talk to you about: 

• Your diagnosis 
• The treatment you received and any side effects you might experience
• The signs and symptoms to look out for and report
• How to contact the team
• What will happen if you need to return to the clinic in the future
• How your GP will be kept updated during your follow-up care. 

What are the signs and symptoms to look out for?

You should contact your CNS straight away if you notice any of the following: 

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

If you had brachytherapy (a type of radiotherapy), you should also look out for these symptoms:  

• Vaginal narrowing, shortening or dryness, which may affect your sex life  
• Urinary symptoms, such as pain when peeing, peeing more often, or a sudden urgency to pee
• Changes in bowel habits, like needing to poo more often, loose stools, or urgency to poo
• Blood in your poo or pee
• Difficulty using your vaginal dilator.

How do I contact the team?

Please contact your CNS on 07977 726591 if: 

• You develop any new signs or symptoms
• You have concerns about managing your health and wellbeing after treatment 
• Your original signs or symptoms return.

This helpline is available between 9am and 5pm, Monday to Friday. If your CNS can’t take your call, please leave a voicemail. A team member will call you back within 24 hours or the next working day. 

What are the alternatives to PIFU?

If you have specific concerns or health-related issues that make PIFU unsuitable, you can continue with hospital follow-up appointments instead. Your doctor and CNS will talk to you in more detail to decide what is best for you. 

Will I need to have any regular tests?

Most patients will not need regular tests or scans related to their cancer or treatment. However, if any routine tests are necessary, we will inform you and your GP. Your GP will then arrange them for you. You will not need smear tests.

Contact details

Endometrial PIFU helpline: 07977 726591

Switchboard: 020 3456 7890