Breast cancer follow up 

Once you have completed treatment for breast 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 breast 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 mammograms or other tests that you may need. Your breast cancer doctor or clinical nurse specialist will talk to you about your individual follow-up plan.

What is 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.

  • Why have you introduced supported self-management follow-up?

    Both the Department of Health and Macmillan Cancer Support encourage supported self-management follow-up for people with breast 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 breast 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 CNS.

  • How will the supported self-management pathway work for me?

    Once you have finished your treatment, you will attend an ‘end of treatment’ clinic appointment with one of the breast cancer clinical nurse specialists. During this appointment, you will receive information on any long-term risks and side effects to look out for. You will also be asked to attend a Health and Wellbeing event (called the Recovery Day) at the Macmillan Support and Information Centre.

    Within six months of finishing your treatment, you will have a check-up appointment with the surgeon. After this you will progress on to the supported self-management pathway, unless there is a specific reason that may make this approach unsuitable for you. This means that you will not have pre-arranged clinic appointments at set times. Instead, you will be able to contact the Clinical Nurse Specialist (CNS) whenever you have any concerns relating to your disease or treatment that you would like to discuss.

    After five years you will be ‘discharged’ from the follow-up pathway, which means that your GP will take over your care. However, you will still be able to access the breast service via your GP.

  • Will I continue to have routine mammograms?

    Yes. Unless you have been advised otherwise, you will continue to have yearly mammograms for at least five years after your treatment, or until you are the right age to join the NHS Breast Screening Programme. If, as a result of your specific treatment, you do not need to have annual mammograms, we will inform you and your GP about this.

  • Are there any other regular tests that I may need to have?

    Following your treatment, we will advise you and your GP if you need any additional regular checks, such as bone density scans (DEXA scans). These scans can tell us if you are developing bone thinning which could lead to a condition called osteoporosis. They will be arranged via your GP who will receive clear instructions on what you need.

  • How do I contact the CNS if I need advice or support?

    You can call the CNS on the dedicated breast supported self-management helpline number 020 3447 2682. If they cannot take your call, please leave a voicemail message and one of the team will call you back within 24 hours. If it is appropriate for you to have a clinic appointment, the CNS will arrange this for you.

    Please contact the CNS if you experience any of the following:

    • Problems following your breast surgery
    • Side effects from chemotherapy or radiotherapy treatment
    • New changes in your breasts
    • Problems relating to your hormone treatment
    • Any other new symptoms relating to your breast cancer which concern you.
  • How will I feel once my treatment has finished?

    Reaching the end of treatment can be a difficult time for people who have had treatment for breast 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:

 Patient information leaflets