Follow Up
After your surgery or treatment, you will usually have follow-up appointments for afterwards. This might be with your surgeon or your cancer doctor, depending on the treatment you have had. When you are seen at follow-up, you will be asked about how you are getting on, whether you have any symptoms and you may be examined. Further scans or blood tests can be arranged for you if there are any worrying symptoms. Your medical team will decide how often and how long they need to see you. In between follow-up appointments, if you have any unexpected symptoms, such as bleeding or brown discharge, pain, weight loss or changes to your bowels or passing urine, you should contact your medical team.
Patient Initiated Follow Up (PIFU)
Many teams across the country use Patient Initiated Follow Up (PIFU) as part of follow up care after treatment for womb cancer. This means that instead of having regular follow up appointments at the hospital, women only contact their clinical team if they have concerns or new symptoms. Evidence suggests that having regular follow up appointments at the hospital does not prevent the cancer returning (recurrence) or help diagnose a recurrence any earlier. PIFU programs work just as well, and symptoms and concerns are addressed more quickly if women report them as they happen.
Usually, the point of contact within the clinical team is the Clinical Nurse Specialist (CNS). They also have lots of information and resources to help support people after womb cancer treatment. When there is a concern, they will help arrange an appointment with the clinical team for a checkup.
When to call the clinical team:
- If there are any ongoing problems following treatment that require help and support (such as treatment side effects, emotional, sexual or practical concerns).
- If there are new symptoms that cause concern such as:
- Vaginal bleeding and/or discharge
- Bleeding after sex
- Persistent pelvic or abdominal pain
- Persistent abdominal bloating
- Leg swelling
- Unexplained weight loss
New symptoms do not automatically mean that the cancer has returned but they do require further assessment. It is important to remember that it is common to get coughs, colds, aches and pains as before and these are best discussed with your GP.
Recurrence
The main reason for follow up of patients who have had womb cancer is so that any recurrence of the cancer can be detected early. If womb cancer comes back within the pelvis, it can sometimes be treated by further, more extensive surgery. Depending on previous treatment, chemotherapy, radiotherapy or immunotherapy may be offered. Hormone therapy can also be given.
If your womb cancer has come back it can be a shocking and frightening time. You may be worried that the cancer will shorten your life. It is often possible to treat the cancer again: the treatment may aim to get rid of the cancer or control the cancer, which can sometimes be for many months or years. Your consultant will discuss the treatment options available to you.
Facing treatment again can be daunting, especially if you had a difficult time previously and you may be worried about experiencing the side effects of these treatments. Please speak to your CNS or medical team so that they can work with you to try and alleviate your concerns and make your treatment as manageable as it can be.
Things that may help you cope with recurrent womb cancer and the prospect of further treatment could include:
- speaking to those close to you about how you are feeling and accepting offers of help.
- talking to your CNS about any specific worries or fears that you don’t feel able to discuss with those close to you.
- set achievable goals and plan things you enjoy doing between treatments – prioritise activities that make you feel good.
See Get Support for more information on sources that could help.
