How do I find the best place to get treatment for my lymphoma?

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1 Produced November 2010 Next revision due November 2012 How do I find the best place to get treatment for my lymphoma? Introduction Fortunately this is not a question that patients with cancers of the blood and lymphatic system really need to ask. The NHS tends to be at its best when it is treating serious, acute illnesses. The doctors who treat leukaemia and lymphoma in this country (haematologists and oncologists) have a long history of collaborating well together and if urgent treatment is required this will be done urgently. The medical investigations and treatment you would receive for lymphoma in a private hospital or clinic would be exactly the same as you would have if you are being cared for by the NHS, however, if that is what you would prefer. Results from Medical Research Council leukaemia trials and the Haematology Trials Group suggest that equivalent patients have the same chance of a good outcome wherever they live and whatever the size of the treatment centre. There is also broad agreement among these specialist doctors about giving strong treatments to those who have high-grade (aggressive) lymphoma and allowing a more watchful approach in people with low-grade (indolent) lymphoma who are not too troubled with symptoms. How do I know that my hospital is up to scratch? Your GP or the doctor who originally saw you before the diagnosis of your lymphoma will have referred you to the appropriate specialist team in your area. They won t mind you checking with them that this is the case, for your own reassurance. Top doctor guides produced by newspapers or other organisations are not usually accurate or complete and are not a good substitute for local knowledge. Features of the service that you can expect to find are: A fully trained haematologist (a doctor who specialises in blood disorders) or medical oncologist (a cancer specialist), who will be in overall charge of your care. There might be joint clinics where these doctors work together. Specialist nurses: the team might include a clinical nurse specialist (CNS) and there might also be other specialist nurses (eg nurses who specialise in chemotherapy). Laboratory services: the hospital will generally have access to a laboratory, usually in the same hospital, that can process rapid blood tests. 1

2 Good links to other clinical services, such as palliative care and surgery. Most hospitals will also have other back-up units such as high-dependency and intensive-care units. Good links with a centre where there are facilities for stem cell or bone marrow transplantation, radiotherapy or other more unusual treatments (or your hospital might in fact be one of these supercentres ). The team, usually known as a multidisciplinary team (MDT), will meet regularly to discuss new patients. A pathologist and a radiologist (a doctor who specialises in taking and interpreting X-rays) are usually present at these meetings. The MDT might discuss the diagnosis and treatment options before a firm suggestion is made, or aspects of your diagnosis and treatment which have already been discussed with you might be reviewed. Some team members travel to a neighbouring hospital for these meetings or they might use a video link. Most teams treat the majority of patients with an in-house or national treatment protocol. You might be offered the opportunity to take part in a clinical trial. If you are eligible to be treated according to one of these trial protocols and you consent to being included in the trial you will be randomised to receive a particular treatment. (Randomisation is the process by which patients in a clinical trial are randomly picked to receive different treatments for more information on this process, ask the helpline for a copy of the Lymphoma Association booklet, About clinical trials.) The specialist will generally explain all the treatment options in your case and explain how your response to treatment will be regularly assessed. You should feel well supported and with good back-up. In high-grade conditions (high-grade non-hodgkin lymphoma and Hodgkin lymphoma), where the intention is to cure, it should be clear to you that the team is aiming to get you through all the treatment you need in the best possible timescale. There should be a plan in place for what will be offered if you do not respond well enough to the treatment or if the disease comes back later. It is occasionally worth checking early on whether the local Health Authority would be reluctant to provide any of these later relapse treatments. There should be a clear plan of what you and the team would do about this. Your GP is probably the best person to discuss your concerns with he or she will have considerable local knowledge and will be well placed to seek reassurance on your behalf. Our helpline is also available for you to talk things through with. 2

3 What should I expect if I have a rarer type of lymphoma? To a certain extent all lymphomas are rare lymphomas are not regarded as one of the common cancers. Also, because there are so many different subtypes of lymphoma it could be argued that each individual one is very rare. However, the treatments and the side effects of the treatments of all of these are very similar and haematologists and oncologists are very familiar with them. Units will often take advice from other lymphoma centres or supercentres if there is a doctor there who tends to see more people with a particular type of lymphoma. Often there are national protocols for the treatment of these more unusual lymphomas in any case. Unit versus centre versus supercentre Most average-sized district hospitals contain a range of cancer-treating teams or units indeed the haemato-oncology team is likely to be a long-established one because of the way haematology services have developed in the UK. Centres are essentially those hospitals with radiotherapy and general oncology facilities and might or might not be teaching hospitals (those which have medical students). Supercentres are a national resource, mainly for research, and generally only treat cancer. The best known are the Royal Marsden Hospital in London and The Christie in Manchester. These distinctions are, however, to a certain extent artificial. Doctors regularly telephone each other for opinion and advice and if a patient does travel to another centre there is often a shared care arrangement to cut down on the travelling. Indeed, if you feel that you are travelling a very long way for something straightforward it is always worth asking about shared care with a more local hospital. It is not uncommon to have a review of the histology (how the tumour looks under the microscope) or scans and, of course, this does not involve you in any extra travel or appointments as it is the slides or images that do the travelling (increasingly these days this is done over the internet). Trial protocols are decided on by a committee and are often fairly straightforward to implement in any lymphoma-treating unit. Under the National Cancer Plan (and previous initiatives) there are more formal networking arrangements. Centres and units in a particular geographical area will have formal groups where that area s services for haematological malignancy are considered. In addition, staff might come together for regular joint meetings at which particularly complex cases are discussed. Networking also exists specifically for cancer research. 3

4 People often believe that there must be advantages or disadvantages of your local hospital being a unit, centre or supercentre. However, because the clinical outcomes from all units broadly fulfilling the criteria described above are similar, then your best unit is probably your nearest unit. This will cut down on travel for you and your relatives; you might already be familiar with the local services at your hospital; and your GP will be used to liaising with the doctors there. If you have any inpatient admissions your relatives wouldn t have as far to travel to visit you and you have the advantage of looking out onto familiar surroundings. District hospital units are used to asking for opinions from other doctors and liaising with other units for particular treatments. It is said that there is a tendency (though I am not sure that this has ever been researched properly) for you to see the senior (ie consultant) staff more regularly in these units, resulting in quite personal attention. The perceived advantages of the larger hospitals is that they inevitably see more patients and therefore could have more experience in certain tumour types. They sometimes have more staff but care can be more fractionated (ie there could be less continuity of care because of doctors and nurses super-specialisation). There is usually more research going on in these centres and they are more likely to be able to offer you the opportunity to participate in phase I and phase II trials (as mentioned in our article about clinical trials please ask the helpline if you would like a copy of this). Systems for making sure that everything goes according to plan should be equally available in units and centres. Postcode prescribing (where some treatments are readily available in some areas but not in others) potentially affects everybody and shows no particular discrimination between units and centres. Second opinions and changing hospitals There are various reasons for seeking a second opinion. One reason might be that you need to go to another centre for treatment under a particular protocol or trial. Another reason might be that you are having a particularly difficult time making a decision with your doctors in the initial hospital. If you are anxious and find it difficult to be reassured that your current team are doing the right thing a second opinion can be useful. It is important in high-grade conditions to begin treatment quite quickly in some cases. It would therefore be useful to think about whether you might want another opinion while you are being assessed so that there isn t any undue delay in getting on with treatment afterwards. We have an article about how to ask for a second opinion please ask the helpline if you would like a copy of this. 4

5 You might need to be referred to other centres or units for the control of particular symptoms or complications, or perhaps if the expertise of palliative care doctors or nurses is needed. If you or your GP are seeking a second opinion you should always make sure that all the relevant information from the initial hospital has been sent to the second doctor. A second opinion is often very useful but only in a minority of cases does it signal the need to change your place of care. There are two main reasons for changing the hospital where you are receiving most of your care. The first is when there is an irretrievable breakdown of relationships with the staff in the unit looking after you; the second is when you are being denied treatment on what you believe to be financial (as opposed to clinical) grounds. Please call the helpline if you would like to talk through these issues. Your committed team There are many factors that determine how you will respond to the treatment for your lymphoma. However, you can be reassured that, wherever you live, there will be a committed, up-to-date and well-organised local team batting for you, whose primary aim is to give you the best chance of doing well. Acknowledgement We are grateful to Dr Paul Revell, consultant haematologist at Stafford General Hospital, for writing this article. About our publications: The Lymphoma Association is committed to the provision of high quality information for people with lymphoma, their families and friends. We produce our information in accordance with nationally recognised guidelines. These include the DISCERN tool for information about treatments, the NHS Toolkit for producing patient information, and the Campaign for Plain English guidelines. Our publications are written by experienced medical writers, in close collaboration with medical advisors with expertise in the appropriate field. Textbooks and professional journals are consulted to ensure that information is as up to date as possible. References are provided where they have been used. Some publications are written by professionals themselves, acting on guidance provided by the Lymphoma Association. Our publications are reviewed every two years and updated as necessary. Our publications are reviewed by a panel of volunteers with experience of lymphoma. Publications are also reviewed by members of the Lymphoma Association helpline team, who have many years collective experience of supporting those with lymphoma. In some instances, our publications are funded by educational grants from pharmaceutical companies. These sponsors do not have any involvement in the content of a publication. They are not invited to see the content and have no editorial input. Lymphoma Association Views expressed in this publication are those of the contributors. The Lymphoma Association does not necessarily agree with or endorse the comments included here. 5