Lymphoma patient triggered follow-up. Your guide to supported self-management after lymphoma

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1 Lymphoma patient triggered follow-up Your guide to supported self-management after lymphoma 4 Recovering from a heart attack Recovering from a heart attack 4

2 Follow up after treatment for cancer is a necessary precaution, as a small number of people can relapse. It s a way to pick up problems early and act quickly enough to be able to treat them. This booklet contains: A summary of patient triggered follow-up (PTFU) for lymphoma, supported self-management and what is meant by your surveillance plan. Information on how and when to contact the lymphoma team to arrange a follow-up appointment. Useful information and contacts to support you as you recover from your treatment for lymphoma. Introducing patient triggered follow-up (PTFU) In the past, patients living with or after lymphoma have been seen at regular intervals by their clinical team for follow-up care. Some patients find these pre-arranged appointments useful and reassuring, however many more find them a source of great anxiety and not particularly helpful, unless they have something specific they wish to discuss. There is strong evidence that: having pre-arranged follow-up appointments does not increase life expectancy or prevent cancer returning symptoms and concerns are addressed more quickly if patients report them as and when they occur, rather than waiting for a routine appointment We have therefore changed the way we manage the care of patients, and this new system is called patient triggered follow-up (PTFU). How to get in touch If you or your GP need to contact the lymphoma team you can do so via: lymphomanurses@uhs.nhs.uk Telephone: See page five for more information about when to get in touch. In an emergency situation call the 24-hour University Hospital Southampton Macmillan acute oncology service support line on What PTFU means for you Instead of having pre-booked follow-up appointments, your PTFU will comprise of two main areas. These are: Supported self-management which puts you in control of your care and allows you to take an active and leading role in your recovery, with the support of your specialist lymphoma team. During your treatment and care, a member of your team will discuss supported self-management with you. Your surveillance plan is the term used to describe the tests we ll plan for you when you start PTFU. 2 3

3 During PTFU you will have regular blood tests to check your: full blood count liver, bone and kidney function LDH level (lactate dehydrogenase) a rise in this enzyme can indicate the presence of lymphoma (a normal LDH reading doesn t necessarily mean that the lymphoma hasn t returned, so it s important that you look out for any new symptoms. There s more information about this in the When to contact the lymphoma team section opposite) some people will also have a regular chest x-ray You and your GP will be given a summary of all the tests included in your surveillance plan when you start PTFU. The PTFU workshop Once you have received this booklet and understand what PTFU and your surveillance plan are, you ll be invited to attend a workshop. This will provide you with more information about how to look after your health after you have completed your treatment for lymphoma. Once you have been to the workshop, you will no longer need to attend routine appointments at the hospital. Instead, you ll be able to contact the lymphoma team directly to arrange a follow-up appointment, if you have any concerns. How long does PTFU last? You ll be able to arrange follow-up appointments as and when you need them for three or four years, once you have finished your treatment and after an initial period of post-treatment observation. When to contact the lymphoma team for a follow-up appointment You need to arrange a follow-up appointment if you have any new symptoms including: - new swollen glands - sweats - unexplained discomfort or pain - shortness of breath - tiredness - any new symptom in any part of your body that goes on for more than two weeks Symptoms can vary according to which parts of the body are involved. For example, an enlarged lymph node might cause pain in the area around it, and lymphoma in the stomach might cause stomach ache. Therefore, if you notice any new symptoms in any part of your body, get in touch with us for an appointment even if the symptoms are not affecting the same part of your body as before. You should also contact us if you notice: possible side-effects from your chemotherapy or radiotherapy problems related to your original treatment for lymphoma such as feeling low or fertility concerns After five years, your GP will become your main point of contact if you have any concerns or notice anything unusual. If you change your contact details or GP during PTFU please notify the lymphoma team. 4 5

4 How to arrange an appointment You can contact the lymphoma team by: Telephone: Please leave us a message on the answerphone (including the best way to reach you), as we check messages every day from Monday to Friday. One of the team will contact you (usually within one working day). They will briefly discuss your concern and arrange for you to have an appointment within two weeks. Your GP can also use this number if they think you need to be seen by the lymphoma team. In an emergency situation you should call the 24-hour University Hospital Southampton Macmillan acute oncology service support line on Reaching the end of your treatment Everyone recovers from lymphoma and lymphoma treatment at different times and in different ways. There is no right or wrong way, just what works for you. Reaching the end of your treatment is a great relief for most but it can also be a difficult time for some people. Although you will be pleased that your treatment is over, you may have a feeling of what now? and miss the security of being seen at the hospital. We have outlined some information below which may be of interest to you while you are recovering. Tiredness Tiredness affects almost everyone who has treatment for cancer. It s important to understand that energy levels can take up to 18 months to recover. Resting when you are tired will help your recovery but it is also important to build up your strength by doing regular gentle exercise, such as walking. Feeling low Everyone looks forward to finishing treatment but it can also be the time they reflect on what they have just been through. It s possible you may be left feeling anxious and low. If you feel this way then please talk to your GP or contact your lymphoma team and they will find the best way to support you. Recovering the feeling in your fingers and toes Some chemotherapies can cause pins and needles or a feeling of numbness in the fingers and toes. These sensations should improve with time but, on rare occasions, can be permanent. If you experience this then get in touch with your lymphoma team. 6 7

5 Fertility Treatment for lymphoma can affect your fertility temporarily (for up to a year or more) or even permanently. Your lymphoma team are there to offer advice if would like to talk about this. Long term risks of chemotherapy There is a very low risk that people treated with chemotherapy or radiotherapy can develop different unrelated cancer in the future. If you have concerns about this please contact your lymphoma team for advice or discuss it with your GP. Returning to work or college If you re returning to work or college, it may help to have a meeting first with your employer, course tutor, human resources department or occupational health team. It can be useful to take someone with you to help take notes (such as a work colleague, students union or student representative). If you re still experiencing side effects from your treatment, you should discuss any reasonable changes that can be made to help your return, such as a gradual return (in stages) or extra exam time. Some useful questions to ask are: what adjustments could your employer arrange that would make work or college easier for you? could you reduce your hours, work flexibly or work more at home? can you have extended assignment times or extra exam time? what facilities are available if you need to rest at work or college during the day? are there any counselling or student support services available? The Disability Discrimination Act (DDA) The Disability Discrimination Act (DDA) covers all types of cancer and exists to protect against unfair treatment compared to others; harassment; victimisation and unfair dismissal. If you think you are being treated unfairly when you are trying to get back to work or college, the DDA is there to protect you. Disability employment advisors are based at Job Centres and Job Centre Plus and can help you if you re having problems. Financial concerns Being diagnosed with cancer can have an effect on your income but you may be able to get help with NHS costs through grants and certain benefits. There are a number of people you can talk to for information to see if you are entitled to any additional help, if financial issues are worrying you. Ask your lymphoma team to refer you to Macmillan Cancer Support, Citizen s Advice Bureau (CAB) or social services for more information. Charities such as Macmillan also give grants and have access to low cost holiday schemes. You will need to apply for these through a care professional, such as your specialist nurse or social worker. Living well after your treatment for lymphoma Although there is no known cause for most lymphomas, it is important to follow a healthy lifestyle after your treatment to help your recovery. 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. Telling friends, other students and work colleagues about your cancer is the best way to overcome any uneasiness that they may have about what has happened to you. They may be reluctant to bring up the subject, so take the lead and help them to help you. 8 9

6 Healthy eating Everyone should try to eat a healthy, balanced diet but it is especially important when you are recovering from lymphoma. Advice for a healthy diet: eat the right amount to keep a healthy weight eat plenty of fresh fruit and vegetables and foods with fibre and starch these should form the main part of your diet eat small amounts of fatty food (fast food, fried food) and small amounts of sugary food (things like cakes, biscuits and fizzy drinks should form only a small part of your diet) drink alcohol in moderation In the long term a healthy diet may reduce the chances of getting heart disease and diabetes, as well as certain types of cancer. See NHS Choices (the details are at the back of this leaflet) for more useful information about healthy eating. If you find eating a balanced diet difficult after your treatment, please let your specialist nurse know. Exercise It s also important to try and build exercise into your life after you have completed your lymphoma treatment. Regular physical activity of 30 minutes at least five times a week has been shown to help prevent and manage over 20 chronic conditions including cancer. We recommend that you try to gradually build up your daily activity, so that you can do at least three twenty minute sessions of moderate activity each week. Walking daily and building up the distance you walk is a good starting point. See the back of this leaflet for local contacts who can help you to become more active. Travel abroad Following treatment for lymphoma, we recommend that you only travel to Europe or northern America for the first year, making sure you can get to a hospital if you need to. After one year, your immune system will have had more chance to recover and will be able to protect you for travel to more exotic places. If you re thinking of going anywhere that requires you to have travel vaccinations, make sure you speak to your lymphoma team first as it s important not to have any live vaccinations (ones which contain the bacteria or virus they re designed to protect against). Your team will be able to give you more advice. Travel insurance It s really important to get health insurance when you travel. Unfortunately some people can find this difficult after treatment for lymphoma. The Macmillan Cancer Support Centre at Southampton General Hospital and the Macmillan website have a list of insurers specialising in the cover of those who have had cancer (see the information at the back of this leaflet). Your medical and nursing teams are happy to write reports or letters to insurers to give details of your illness and treatment if required. Dealing with worries about lymphoma returning Am I cured? You will find that most doctors do not use the term cured. As much as we d like to, we can t give you a 100% guarantee that your lymphoma will never return. The treatment that you have had to date has given you the greatest chance of being well in the long term. Your surveillance plan is designed to ensure that any problems are detected early. It s important that you contact the team if you have any concerns, so we can see you and take any action required quickly

7 What is the chance of the lymphoma returning? The risk of the lymphoma coming back is different for every patient. However, by having the treatment recommended by your oncologist you have minimised your personal risk of having any further problems from lymphoma as much as possible. Eating a healthy, balanced diet and taking regular exercise can have a positive effect on your health and helps everyone reduce their risk of getting cancer. I am worried that the lymphoma will come back, what can I do? It is very normal to feel worried that the lymphoma could come back. You may also feel very uncertain about the future and find it difficult to get on with life after completing your treatment. Your lymphoma team understand this, and are here to help you. Finding support You may find it helpful to get some extra support dealing with your feelings, for example talking about your experiences with someone. Your GP or lymphoma team can arrange this for you, so please let us know if you think extra support would help. There are also some useful contacts on the opposite page and at the back of the leaflet. Useful contacts In addition to your clinical team, there are a number of other organisations you may wish to contact who can help support you: National contacts Lymphoma Association A charity offering support including a helpline, live web forum and buddy system (putting you in touch with another who has had similar experiences you may find this very helpful). PO Box 386 Aylesbury HP20 2GA Freephone: , open Monday to Friday Leukaemia and Lymphoma Research Information and advice helpline and website Eagle Street London WC1R 4TH Helpline: , open Monday to Friday Macmillan Cancer Support Support for people with cancer and information about cancer types and treatments. Helpline: Financial Helpline:

8 Cancer Research UK Information about cancer types, diagnosis, prevention, clinical research trials and statistics. Helpline: Turn2us A charity offering financial support. Helpline: Live well NHS Choices NHS website for information about health, diet, exercise and stopping smoking. It includes the popular and motivating Couch to 5K programme to get everyone exercising more. Weightwatchers Local contacts Southampton Macmillan Cancer Information and Support Centre A place to relax, get information and support for all patients, family and friends being treated at University Hospital Southampton NHS Foundation Trust. B level, Southampton General Hospital macmillancancerinformationsupportcentre.aspx Telephone: Wessex Cancer Trust A supportive local charity providing information, grants, counselling and complementary therapies. Telephone: Waterside Cancer Support Centre A non-clinical support centre in Hythe for cancer patients and their families. The Grove, 25 St. Johns Street, Hythe, SO45 6BZ Telephone: Hampshire Macmillan Citizens Advice Service A confidential service for advice on welfare benefits, employment, finance, housing and general advice for people living in Hampshire, excluding the Isle of Wight. (An outreach service is also available at the Southampton General Hospital Macmillan Centre). Telephone: Portsmouth Macmillan Centre Queen Alexandra Hospital, Portsmouth Telephone: Quitters stop smoking services Support for people who want to stop smoking Hampshire: Southampton: Health trainers A free, confidential, one-to-one service providing support and encouragement with lifestyle changes. Southampton:

9 Some of the sections have been adapted with permission from information by Macmillan Cancer Support and the Lymphoma Association. If you need a translation of this document, an interpreter or a version in large print, Braille or on audiotape, please telephone for help University Hospital Southampton NHS Foundation Trust. All rights reserved. Not to be reproduced in whole or in part without the permission of the copyright holder. Version 2. Published December Due for review September (2) 4 Recovering from a heart attack Recovering from a heart attack 4