Leaflet Details
| Title | Personalised Stratified Follow Up After Treatment for Lymphoma |
| Department | Haematology / Oncology |
| Author(s) | Haematology Team |
| Review Date | February 2025 |
| Next Review | February 2027 |
| Download | A5 Booklet PDF |
| Accessibility Options | Click on the Recite Me button to show our accessibility resources |
Patient Information
Introduction
Monday - Friday 08.30 - 16.30pm
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 patents report them as and when they occur, rather than waiting for a routine appointment.
Who is eligible for the supported self-management programme?
You will be eligible for the programme if:
- You are currently not receiving complex treatment (although you may be on some maintenance treatment)
- You can confidently demonstrate to the hospital team that you can self-manage by checking signs for cancer recurring.
Once the supported self-management programme has been explained, you will be on this pathway. You will be given the contact details for your healthcare professional who you can contact if you have concerns. At any time, whilst you are on the supported self-management programme, you can arrange a telephone consultation with the health professional who will, in the first instance, assess you over the phone to decide the best course of action.
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 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.
Will I need to have any regular tests?
You may still need to have some tests as part of your follow-up and will receive appointments for any follow up tests as usual. The hospital team will let you and your GP know the results of the tests and you will be brought back to clinic if anything is of concern. If you have any symptoms or worries about any part of your cancer in between tests, you can telephone the healthcare professional who is looking after you.
How long does supported self-management last?
Each patient is different and has different health needs, so we can’t specify how long your self-management programme will last. You should be told how long your surveillance period will be in your End of Treatment Summary. Following discharge from the supported self-management programme, your GP will become your main point of contact if you have any concerns or notice anything unusual.
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:
- New and unexplained weight loss
- Drenching night sweats
- High temperatures that come and go with no obvious cause.
- Recurrent infections requiring antibiotics from the GP
- Enlarged lymph nodes (your nurse will have shown you how to check for these)
- Recurrence of any symptoms associated with your lymphoma diagnosis.
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 Haematology team as required. A Macmillan support worker will also be available to offer information support over the phone once you have completed treatment.
Health and Wellbeing Advice
Diet
You should try to eat a good, balanced diet. A healthy diet is especially important if you have had cancer. Please note that the diet that you need to follow may be specific for your cancer type, so it is highly recommended that you discuss your dietary requirements with your hospital team, dietitian, or a GP. Food is very important to help you maintain your health. It contains essential vitamins and minerals as well as protein to help the body repair itself and recover from illness. If you would like to take a multivitamin, please check with your pharmacist that it is complete in vitamins and minerals. Eating well also helps to maintain weight and to fight infections. However, when you feel unwell you may not feel like eating – just when you need food the most! If you’re diabetic, please consult your diabetes healthcare professionals about the monitoring of your diabetes and medication.
Exercise
It is recommended that you should aim to be physically active every day. Any activity is better than none and more activity is better. Reduce time spent sitting or lying down and break up long periods of not moving with some activity. Do strengthening activities that work all the major muscles e.g. Legs or arms on at least two days a week. Regular physical activity can help manage over 20 chronic conditions, including cancer. Walking daily and building up the distance you walk is a good starting point. You can talk to your healthcare professional or visit the Macmillan website about how best to get started and find out about activities in your area including walking for health groups.
Stopping smoking
Stopping smoking is one of the most important things you can do to keep yourself well. We realise this can be a difficult thing to do, so if you need help then take a look at the useful contacts information at the back of this leaflet or ask one of the specialist nurses.
Alcohol
Once you have completed your treatment there is no need to avoid alcohol entirely. It is very important to ask your GP or pharmacist first to ensure it is suitable to consume alcohol with any medications you might take. We would always advise that you should not drink more than the government’s recommendations, which are to:
- Drink no more than 14 units a week (one unit is 10ml or 8g of pure alcohol)
- Spread your drinking over 3 or more days if you regularly drink as much as 14 units a week
- Cut down by trying to have several drink-free days each week OFFICIAL 5 Fourteen units (14 units) is equivalent to 6 pints of average strength beer or 10 small glasses (small glass size is 125 ml) of low strength wine.
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 haematology 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.
Relationships and Sex
Relationships can be very difficult following a cancer diagnosis, both emotionally and physically. Some people find it hard to talk about sex or relationship problems because they feel embarrassed or self-conscious. You can contact your GP or nominated healthcare professional who will be able to signpost you to the relevant service or organisation who might be able to help and discuss further.
Our commitment to you
If the haematology nurse feels that you should be seen back in one of our clinics because of any symptoms you are experiencing, we will make sure that you are offered an appointment within seven days of telephoning us. 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, 8.30am - 16:30pm and will be answered by a Macmillan Cancer Support Worker. If your call is not answered immediately, please leave your name, hospital number and a short message and your call will be returned by the end of the working day.
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
Local Support
Patient Navigator
01932 726856
Runnymede and Spelthorne Citizens Advice Bureau
Advice Assessment Telephone: 01932 827187
Mon-Fri from 10:00am -12:30pm
https://www.randscab.org.uk
SouthWest Surrey Citizens Advice
Tel: Surrey Advice Line 0808 812 7087
https://casws.org.uk/get-advice/call-us/
The Ashford and St. Peter’s Hospitals Switchboard
Tel: 01932 872000
Surrey and Sussex Cancer Alliance website has several videos about Health and Wellbeing during and after your cancer treatment.
https://surreyandsussexcanceralliance.nhs.uk
National charities that offer support and information
Macmillan Cancer Support
Free helpline: 0808 808 0000
https://www.macmillan.org.uk
CREST Cancer Support Charity
Tel: 01784 446298
https://www.crestcancer.org.uk
Lymphoma Action
https://lymphoma-action.org.uk
Blood Cancer UK
https://bloodcancer.org.uk/
Welfare and Benefits Advisor
Macmillan Welfare Rights
Tel: 0344 847 7727
Email:
Cancer Care Map
Cancer Care Map is an online resource to help people living with cancer find care and support services in their local area, anywhere in the UK. The website is run by cancer charity, The Richard Dimbleby Cancer Fund.
https://www.cancercaremap.org
Marie Curie care and support
https://www.mariecurie.org.uk
Cancer Research UK
Cancer Research UK has a wide range of information on the causes of cancer, treatment (including clinical trials) and how to cope with cancer.
https://www.cancerresearchuk.org
Carers Trust
https://carers.org
