Leaflet Details
| Title | Personalised Stratified Follow Up After Treatment for Primary Endometrial Cancer |
| Department | Gynaecology / Oncology |
| Author(s) | Gynae-Oncology Team |
| Review Date | April 2024 |
| Next Review | April 2026 |
| Download | A5 Booklet PDF |
| Accessibility Options | Click on the Recite Me button to show our accessibility resources |
Patient Information
Introduction
Monday - Friday 08.30-16.30
Contact Number: 01932 726856
This information is for patients on our Personalised Stratified Follow Up service.
The personalised stratified follow up service has been specifically designed to support you when you have completed your treatment. It is a type of follow up where you, the patient, are in control. Instead of being offered regular visits, you can make an appointment to see us if you have worries or concerns following your consultation. It is based on evidence showing that symptoms and concerns are addressed more quickly if patients report them as and when they occur, rather than waiting for a routine appointment.
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.
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.
End of Treatment Review
Following your treatment, you will be offered an end of treatment review appointment with your clinical specialist team. This will help you to prepare for the next stage of your care, where you are in control of your own health and wellbeing with the support of your clinical team. At this appointment you will be given an end of treatment summary that will include:
- A summary of your diagnosis and treatment
- Information on any future appointments and tests
- Information about the symptoms and side effects that you need to be aware of, and who to contact should you experience them
- Advice on how to keep yourself well
- Information on the service available to support you in moving forward following your treatment
- Information on how to contact your clinical specialist team.
A copy of your end of treatment summary will also be sent to your GP.
Summary of symptoms you may want to report
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
The Open Access Telephone Service
Once you have entered the PSFU program you should call us to talk about any new symptoms that you are concerned about or other issues you may have. The aim of the telephone service is to provide helpful advice and allow you to have rapid access back to the gynaecology team as required. A Macmillan support worker will also be available to offer information support over the phone once you have completed treatment.
Managing Menopausal Symptoms
Most women diagnosed with endometrial cancer will have already gone through the menopause. In those women who have not yet gone through the menopause, surgery for endometrial cancer usually includes removing the ovaries, which will lead to a surgically-induced menopause.
Hot flushes and night sweats are the most common menopausal symptoms, but many women also notice weight changes, vaginal dryness and changes in libido and mood swings.
Hormone Replacement Therapy
Although HRT is not routinely started after treatment for all women, it can be considered and commenced after discussion with your consultant and/or CNS. This discussion will explore menopause symptoms that are affecting your quality of life, and the risks and benefits of starting HRT.
Vaginal Dryness
If you are suffering from vaginal dryness, vaginal lubricants / moisturisers such as Sylk or Yes can be helpful. If these do not solve this problem, then a topical oestrogen cream may help. However, this should be discussed with your consultant or GP.
Feelings and Emotions
Everyone will have different feelings when they no longer need to see their medical team regularly. Some people feel relieved that they can start to get their lives back to normal, others may be concerned about what can happen in the future and anxious about losing contact with the hospital where they received their treatment. Most people worry about the cancer coming back. This is very normal and usually these anxieties lessen with time.
Realising that there is a problem and getting help is the most important thing you can do. While it is normal to feel low from time to time, sometimes you may find the way you are feeling is interfering with your enjoyment of life. If you are finding it difficult to cope, your gynaecology nurse specialist may be able to arrange an appointment for one-to-one support or counselling. It may also help to contact a local or national support organisation such as Macmillan Cancer Support. Their contact details can be found at the back of this booklet.
Our Commitment to You
If the gynaecology nurse feels that you should be seen back in one of our clinics because of any symptoms you are experiencing, we will ensure that you are offered an appointment. If necessary, further investigations may be organised and an out-patient appointment arranged to receive the results. Sometimes, verbal advice may replace the need for an outpatient appointment and may be supported by correspondence to you and your GP. We hope that this enhances and promotes your ability to care for yourself once treatment has been completed and enables you to benefit from the team’s expertise as required.
The telephone service is open Monday-Friday, 8.30-16:30 and will be answered by a Macmillan Cancer Support Worker. This may not be the gynaecology support worker, but others will contact the team. If your call is not answered immediately, please leave your name, hospital number and a short message and your call will be returned as soon as possible.
Finally
If you are worried about something to do with your cancer diagnosis, or the treatment that you have had for it, please contact your clinical nurse specialist team. They would rather see you with something that turns out to be nothing, than for you to be at home worrying. They are there to help you, so please call if they have any questions or concerns.
Further Information and Useful Contacts
Patient Navigator
01932 726856
Monday - Friday 8.30 - 16:30
Email:
Macmillan Cancer Support
Free helpline: 0808 808 0000
Monday - Sunday 8.00 - 20:00
https://www.macmillan.org.uk/
CREST Cancer Support Charity
Tel: 01784 446298
https://www.crestcancer.org.uk/
Welfare and Benefits Advisor
Macmillan Welfare Rights
Tel: 01483 230849
Email:
South West Surrey Citizen Advice
Tel: 01483 576699
https://casws.org.uk/
Runnymede and Spelthorne Citizens Advice
Advice Assessment Telephone: 01932 827187
