Once you have completed treatment for hodgkin lymphoma 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 lymphoma 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. Your hodgkin lymphoma 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.
Both the Department of Health and Macmillan Cancer Support encourage supported self-management follow-up for people with lymphoma. 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 lymphoma 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.
It is important to note that this type of follow-up is only suitable for certain groups of people with lymphoma. Your doctor or CNS will talk to you about supported self-management follow-up if they think it could be right for you.
Once you have finished your treatment, you will attend an ‘end of treatment’ clinic appointment with one of the lymphoma clinical nurse specialists. 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 lymphoma clinic every three months for one year. 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 clinic appointments at set times. Instead, you will be able to contact the lymphoma service whenever you have any concerns relating to your disease or treatment that you would like to discuss.
We will write to you once a year to confirm your contact details and ask you to fill in a questionnaire about your quality of life. After five years on the supported self-management pathway, you will be ‘discharged’, which means that your GP will take over your care. However, you will still be able to access the lymphoma service via your GP.
You can call the lymphoma clinical nurse specialists on 020 3447 7359 if you have any queries or problems relating to your lymphoma or its treatment. It is particularly important for you to contact us if you are experiencing any of the following:
- New lumps
- Persistent chest symptoms such as a cough or breathlessness
- Abdominal symptoms such as unexplained persistent pain
- Generalised itching or persistent rash
- Unintentional weight loss
- Unexplained fevers over 380C
- Recurrent drenching night sweats
- Nerve or brain symptoms such as numbness, tingling, weakness in a limb, visual problems, memory problems and/or balance problems
- Extreme tiredness, or
- Any other new symptom that is worrying you.
The helpline is monitored between 9am and 5pm, 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 lymphoma. 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, which 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.
- Lymphoma Association
- Macmillan Cancer Support
- London Cancer - Directory of services