Once you have completed treatment for prostate cancer at UCLH you will enter a period of follow-up care. Follow-up is an important way of monitoring your health. It allows us to identify any signs that the cancer may have returned or progressed, and it also supports you in addressing any ongoing side effects of your cancer or its treatment. Follow-up will vary depending on the type of prostate cancer and the treatment you have received, and will often include a combination of face-to-face or telephone appointments with your doctor or a clinical nurse specialist, as well as any regular PSA tests or other tests that you may need. Your prostate cancer doctor or clinical nurse specialist will talk to you about your individual follow-up plan.
Prostate cancer supported self-management follow-up
Supported self-management follow-up is a new approach to follow-up care after your cancer treatment has finished. It replaces routine clinical appointments, which means that you do not have to come to hospital when you are feeling well and are not experiencing any symptoms. Instead, you can contact your specialist team and arrange to see them as and when you need to.
Both the Department of Health and Macmillan Cancer Support encourage supported self-management follow-up for people with prostate cancer. It is now being used at many hospitals across the UK, although it may be referred to differently in other places.
The main advantage of this approach is that you will not have to attend regular follow-up appointments in the prostate clinic. These appointments are often a source of anxiety and many patients find them unnecessary when they are feeling well.
Also, evidence suggests that new problems are unlikely to be picked up by clinical examination. Patients tend to identify most recurrences themselves in between routine appointments. If this happens, or whenever you have any concerns you would like to discuss, you will be able to contact the Prostate Cancer Clinical Nurse Specialist (CNS).
Once you have finished your treatment, you will attend an ‘end of treatment’ clinic appointment with a prostate cancer CNS. During this appointment, you will receive information on any long-term risks and side effects to look out for. We will also ask you to attend a Health and Wellbeing event (called the Recovery Day) at the Macmillan Support and Information Centre.
You will be seen in the prostate cancer clinic until your Prostate Specific Antigen (PSA) levels are stable. After this you will progress on to the supported self-management pathway, unless there is a specific reason for you not to. This means that you will not have pre-arranged face-to-face clinic appointments. Instead, we will ask you to have a PSA test done every 6 months and we will book you into our CNS telephone clinic to discuss the results. You will also be able to contact the prostate cancer service whenever you have any concerns relating to your disease or treatment that you would like to discuss.
Once your PSA levels have been stable for five years following treatment, we will ask your GP to monitor them yearly and refer you back to us if necessary.
It is important to note that supported self-management pathways are not for everyone. If you have specific concerns or health-related issues that make supported self-management follow-up unsuitable, then you will continue to have traditional follow-up appointments in the cancer outpatient clinic.
You can call the prostate cancer CNS team on 020 3447 7151 or 07852 220 226 if you have any queries or problems relating to your prostate cancer or its treatment. It is particularly important for you to contact us if you are experiencing any of the following:
- Blood in the urine
- Increasing difficulties in passing urine
- Aches and pains in the bones lasting more than 1 week
- Rectal bleeding and/or discomfort
- Difficulty controlling your bowel movements
The helpline is monitored between 09:00 and 16:00, Monday to Friday. If no one is available to speak to you when you call, please leave a message and we will get back to you within 24 hours. If it is appropriate for you to have a clinic appointment, the CNS will arrange this for you.
Reaching the end of treatment can be a difficult time for people who have had treatment for prostate cancer. Although you might be relieved that the treatment has finished, you may also feel anxious about not having regular hospital appointments any more, especially if you continue to experience side effects from your treatment. It is normal to feel this way and there are a number of places where you can find additional information and support. They include:
- Macmillan Support and information Service is located on the ground floor of the University College Hospital Macmillan Cancer Centre. The team offers a range of supportive care services for those affected by cancer.
- Prostate Cancer UK
- Macmillan Cancer Support
- London Cancer - Directory of services