[email protected] www.lymphomas.org.uk Produced 28.02.2011 Revision due 28.02.2013 Symptoms of non-Hodgkin lymphoma Lymphoma is a cancer of cells called lymphocytes. These cells are part of our immune system, which helps us to fight off infections. There are several different kinds of lymphoma but they are put into two main categories, Hodgkin lymphoma and nonHodgkin lymphoma. In Hodgkin lymphoma a particular abnormal cell is seen under the microscope (the Reed–Sternberg cell). Non-Hodgkin lymphomas, which are much more common, are all the lymphomas where this cell is not seen. When non-Hodgkin lymphomas are looked at under the microscope the pathologist is able to tell if the cancerous cells are dividing quickly or slowly. If the cells are dividing quickly the lymphoma is reported as being a ‘high-grade’ (or aggressive) non-Hodgkin lymphoma. If the cells are dividing slowly it is called a ‘low-grade’ (or indolent) non-Hodgkin lymphoma. Non-Hodgkin lymphoma can be tricky to identify compared with other cancers and many people, looking back, will have had symptoms for weeks or even months before being diagnosed. A few people will have no symptoms at all and will feel perfectly well before being diagnosed with non-Hodgkin lymphoma. There is no one symptom that is unique to non-Hodgkin lymphoma – there are many potential symptoms, depending on what parts of your body are involved. Another problem is that many of the symptoms people experience with non-Hodgkin lymphoma are symptoms that you can have with other illnesses. For example, you can have swollen glands in your neck after a throat infection. In spite of these difficulties, however, it is possible to say that certain symptoms – and particularly certain combinations of symptoms – are common in non-Hodgkin lymphoma. There is not one set of symptoms that people with high-grade non-Hodgkin lymphoma get and another set that people with low-grade non-Hodgkin lymphoma experience. They cause the same types of symptoms. There are a few differences between them in general terms, however, which we will explain in the next paragraph and we will point out any other differences between them as we go through the various symptoms. Low-grade non-Hodgkin lymphomas very often cause few symptoms other than enlarged lymph nodes in several places in the body. High-grade non-Hodgkin lymphomas tend to 1 Lymphoma Association, PO Box 386, Aylesbury, Bucks HP20 2GA Registered charity no 1068395 [email protected] www.lymphomas.org.uk cause symptoms that develop quickly and are more likely to cause symptoms that affect the whole body, such as weight loss. These lymphomas are also more likely to cause symptoms in places other than the lymphatic system, such as the intestines, the skin and the brain. In this article we will describe the most common symptoms of non-Hodgkin lymphoma and explain why they happen. The symptoms you might have can be divided into: ● ● ‘local’ symptoms, which means that they develop around where the lymphoma is growing, and ‘systemic’ symptoms, which relate to the impact of the lymphoma on your whole body. Local symptoms of non-Hodgkin lymphoma include: ● lumps – these are enlarged lymph nodes (glands) and are not usually painful ● chest symptoms – cough, breathlessness ● abdominal symptoms – lumps, pain, indigestion, change in bowel habit (eg diarrhoea) ● ● pain – in bones, abdomen, lymph nodes (though in the lymph nodes this is usually more of an ache rather than a pain) brain and nerve symptoms (these are rare) – dizziness, numbness, tingling, weakness in a limb, visual problems, memory problems ● skin problems – lumps, redness or itchy patches ● lumps in other more unusual places (eg in the breast, testicle, upper chest, jaw, nose). The systemic symptoms you might experience are: ● fevers ● night sweats ● weight loss – if this is unexplained (eg if you haven’t been on a diet) ● itching ● fatigue (extreme tiredness) ● difficulty fighting off infections ● a tendency to bruise or bleed more easily. 2 Lymphoma Association, PO Box 386, Aylesbury, Bucks HP20 2GA Registered charity no 1068395 [email protected] www.lymphomas.org.uk The first three symptoms in this list – fevers, night sweats and unexplained weight loss – are called ‘B symptoms’. They often occur together, and whether you have these B symptoms or not will be taken into consideration when your treatment is being planned. Local symptoms Enlarged lymph nodes Enlarged lymph nodes are sometimes referred to as ‘lymphadenopathy’. Lymphoma typically starts to grow in the lymph nodes. Lymph nodes enlarge because they contain lots of cancerous cells. Because cancer cells don’t die in the way that normal cells do, and because they grow more quickly, they collect to form lumps. People with non-Hodgkin lymphoma will almost always have enlarged lymph nodes somewhere in the body. Some lymph nodes are easier to find than others. For example, an enlarged lymph node in the neck, armpit or groin will be obvious because it is close to the surface, but other lymph nodes, like those in the abdomen or the chest, are not so easy to feel from the outside. These can press on other things to cause pain or irritation, or they might only be detected when you have a scan or an X-ray. Some people have enlarged lymph nodes in just one area. Other people might have enlarged lymph nodes all over their body. This is called generalised lymphadenopathy. Although generalised lymphadenopathy can happen with any lymphoma it is most common in low-grade non-Hodgkin lymphomas. People with low-grade non-Hodgkin lymphoma often say that their lumps come and go. This is because the activity of the disease can vary from time to time. Sometimes it is active, making lots of cancerous cells that collect and cause the lymph nodes to swell. Then it will quieten down, some of the cells will die or be absorbed, and the lymph node will become smaller again. Some people feel that their enlarged lymph nodes ache a bit, but usually they are not painful unless they are pressing on something else, such as a nerve. Chest symptoms – cough and breathlessness Why might you have a cough? When your body feels like it has something in an airway that shouldn’t be there – such as mucus – you cough to get rid of it. Enlarged lymph nodes in the chest can have the same effect. They press on the lung tissue and the airways, causing irritation and a cough. 3 Lymphoma Association, PO Box 386, Aylesbury, Bucks HP20 2GA Registered charity no 1068395 [email protected] www.lymphomas.org.uk You can be short of breath if: ● ● ● enlarged lymph nodes in your chest are pressing on your lungs and airways, preventing them from expanding and working properly. This makes your lungs work harder to get enough oxygen and it will make you feel short of breath. lymphoma in your chest is damaging the lymph node tissue itself or the surrounding tissues it presses on. In some cases, this damage will result in collections of fluid forming around your lung (a pleural effusion). This collection of fluid presses on your lung, causing pain and making it difficult for the lung to expand properly, and this makes you feel short of breath. you are anaemic, meaning that you have a shortage of red blood cells. If your body does not have enough red blood cells, it can’t carry sufficient oxygen. This makes you breathe harder – your body is compensating by getting more oxygen in. Anaemia is not a particularly common symptom of lymphoma, but it can happen if there is lymphoma in the bone marrow. Abdominal symptoms It is relatively common for lymphoma to involve the gastrointestinal tract (the gut). This is the most common site of ‘extranodal’ disease, meaning disease outside the lymph nodes, which is more frequently seen with high-grade non-Hodgkin lymphoma. The symptoms will vary, depending on what part of the gut is involved. Lymphoma in the stomach, for example, can cause inflammation of the stomach lining, pain and bleeding. Lymphoma in the bowel can cause abdominal pain and change in bowel habit, such as diarrhoea or constipation. You might have a feeling of fullness after eating even small amounts of food if the lymphoma is pressing on the stomach or you might have a feeling of pressure in the abdomen or pelvis.Your abdomen can be swollen, especially if your spleen or liver are enlarged, and this can be uncomfortable. Pain Although the enlarged lymph nodes themselves aren’t usually painful, lymphoma can put pressure on the tissues round about the nodes and this can cause pain. For example, pain in the back and pain in the abdomen are relatively common symptoms of lymphoma, particularly in high-grade non-Hodgkin lymphomas. 4 Lymphoma Association, PO Box 386, Aylesbury, Bucks HP20 2GA Registered charity no 1068395 [email protected] www.lymphomas.org.uk Lymphoma can involve the bone itself and this would be painful but lymphoma in the bone is rare. Bones can be painful in some very high-grade lymphomas because of the pressure of lots of cells collecting in the bone marrow. Brain and nerve symptoms Lymphoma starting in the brain or nervous system is very rare, but this can lead to symptoms of headache, seizures, memory problems, dizziness, vision problems or numbness, tingling or weakness in a limb. Skin problems Although itching is more often a general, systemic symptom (see later), it can also occur because of lymphoma in the skin. T-cell non-Hodgkin lymphomas are more likely to involve the skin than other lymphomas. Some of these are low-grade lymphomas that are confined to the skin. In other cases the lymphoma will be in the skin and in the lymphatic system too. Lymphoma in the skin can produce redness, dryness, raised patches and scaly texture. Systemic symptoms Fevers and night sweats The precise explanation for fevers and night sweats is not known. It might be that the presence of cancerous cells in your system causes your immune system to react in a way that is similar to fighting infection. This can result in your temperature going up and down. Having a temperature of over 38°C (over 100.4°F) for several days in a row is considered to be high enough for long enough to be suspicious of what doctors would call ‘fever’. Night sweats are sweats that are bad enough to make your nightclothes and bedlinen wet. They might happen because your body detects a rise in temperature and attempts to cool itself off by sweating, something like perspiration. It might be that night sweats happen when you are asleep because you are not aware of feeling hot so you don’t do anything about it. Fevers and night sweats could also be a response to some of the abnormal hormones and proteins produced by the cancerous cells – your body is reacting to get rid of something that is unknown and unwelcome. Unexplained weight loss Unexplained weight loss can happen with any lymphoma, but it is more typical of high-grade non-Hodgkin lymphomas. ‘Unexplained’ means a weight loss of more than a 5 Lymphoma Association, PO Box 386, Aylesbury, Bucks HP20 2GA Registered charity no 1068395 [email protected] www.lymphomas.org.uk tenth of your total body weight over a period of a few months which happens without you trying to lose weight. Weight loss occurs because the cancerous cells are placing a heavy demand on your system. Your body is using up its resources to feed the cancerous cells and to try and get rid of them. Lymphomas that grow very quickly and place a sudden demand on your body’s resources are more likely to make this happen. Itching Itching is sometimes just felt in the hands and feet, sometimes the lower legs. A few people feely itchy all over the body. It is usually worse in bed at night. In cutaneous T-cell nonHodgkin lymphoma the itch is felt in the patches where the skin is affected (so it is a local symptom in this case). The cause of the itch in non-Hodgkin lymphoma is not known, but it is thought to be due to chemicals that the immune system releases as it reacts against the malignant lymphoma cells. These chemicals, which are called ‘cytokines’, irritate nerves in the skin and make it feel itchy. Fatigue Fatigue is a very common experience for people with all kinds of lymphoma – before, during and after treatment. Fatigue is not just feeling a bit tired because you have been busy or exercising – it means that you feel exhausted for no apparent reason or feel washed out after doing very little. The precise reasons for feeling fatigue are not known, but it is thought to be the result of a combination of factors, including the impact of the disease on your body’s energy resources, the impact of stress and the effects of the treatment. Difficulty shaking off infections Because lymphoma is a disease of your immune system, it can mean that your immune system doesn’t work as well as it should. The cancerous white cells that make up the lymphoma are produced at the expense of the good white cells that normally fight infections. This can make you more prone to pick up infections and they might be more severe or last for longer than they would normally. Bruising and bleeding Occasionally the numbers of special blood cells that help with blood clotting (platelets) are reduced when you have non-Hodgkin lymphoma, though this is unusual. This can show up as nosebleeds, heavy periods in women, or tiny blood spots just under the skin. 6 Lymphoma Association, PO Box 386, Aylesbury, Bucks HP20 2GA Registered charity no 1068395 [email protected] www.lymphomas.org.uk If you are worried Any symptom or combination of symptoms you have will be considered in light of your individual medical history when you first go to your family doctor or hospital assessment. If your lymphoma comes back after it has been treated it might show up with the same symptoms you had the first time, but you can develop new symptoms.You should always talk to your specialist about any symptom that is worrying you at any stage of your diagnosis, treatment or follow-up. More information This article is based on a Lymphoma Association article, ‘Signs and symptoms of lymphoma’ and our booklets, High-grade non-Hodgkin lymphoma and Low-grade non-Hodgkin lymphoma. For more information, or for a copies of these, visit our website at www.lymphomas.org.uk or telephone the Lymphoma Association’s freephone helpline 0808 808 5555. Talk to your key worker if you have any concerns about your health or treatment. The Lymphoma Association cannot provide information about individual diagnosis or treatment. The information provided by the Lymphoma Association is not a substitute for advice from your health professionals. 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 advisers 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. 7 Lymphoma Association, PO Box 386, Aylesbury, Bucks HP20 2GA Registered charity no 1068395