You are on page 1of 12

Freephone helpline 0808 808 5555

Late effects of lymphoma
Many people with lymphoma will now live for many years after they have had treatment.
Most people will be healthy and have few ill effects once they have recovered from their
treatment. A few people though will have health problems that affect them after their
treatment has finished. These are often known as ‘late effects of treatment’.
This leaflet aims to answer some of the questions you may have about the late effects
of lymphoma treatment:

What is meant by ‘late effects of treatment’? (see below)

Am I at risk of late effects? (see below)

Which side effects can become long-term problems? (page 2)

What late effects can develop some time after treatment? (page 5)

What can I do about possible late effects? (page 9)

We can provide further information about life after treatment, including looking
after yourself, your close relationships and the emotional impact of having
lymphoma. Please ring our helpline (0808 808 5555).

What is meant by ‘late effects of treatment’?
Late effects of treatment are health problems that can affect you months or even
years after you have had treatment. They may be long-term side effects of your
treatment. These are side effects you had during your treatment that have not gone
away some time later. Other late effects are problems that only develop some months
or even years after you have finished treatment. You may hear people refer to these
problems as having a ‘delayed onset’.

Am I at risk of late effects?
Your risk of late effects depends on a number of different things including:

Your treatment. For chemotherapy, it depends on the type(s) of drug and the dose
used. For radiotherapy, it depends on what part of your body is treated and the
dose of X-rays given.
Number of other treatments. More courses of treatment may add to the risk.

Your age – both now and when treated. Some late effects are more likely in those
who were young when treated; others occur more often in those treated later in life.

Late effects of lymphoma treatment


This might add to your risk of some late effects. Most specialists advise that men with lymphoma avoid making their partner pregnant while on chemotherapy and for at least 3 months afterwards. Do talk about any concerns you have with your hospital team because everybody’s circumstances are different. Many people are able to have children after treatment without any problem. Many people who are at risk have no late effects from their lymphoma treatment. Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 2/12 . The sperm will be used in the future if you want children but your partner is unable to become pregnant naturally. ●  Your family history. Reduced fertility in men If your treatment could affect your fertility. Radiotherapy to the pelvis can also harm fertility. Reduced fertility Certain types of chemotherapy can reduce your fertility. ● Before your treatment begins. but remember no one can predict exactly what will happen to you in the future. your risk of some late effects could be higher. Modern treatments are designed to do this with the least possible risk to your long-term health. such as those used in stem cell transplants. This is a well-proven treatment because sperm can be kept frozen for many years. meaning it is less likely you will be able to have children. You should be made aware of possible long-term and late side effects. for example. Higher doses of chemotherapy. your specialist will talk about sperm storage with you before you start treatment. Your lifestyle may also affect your risk. This is because treatments may damage your sperm and could be harmful to a developing baby. but that doesn’t mean you will have problems. smoking will put you more at risk of several late effects. The following are some of the more common long-term effects. If you have other health problems. your specialist’s main concern will be to treat your lymphoma successfully. Which side effects can become long-term problems? Some side effects that start during your treatment are less likely than others to go away quickly after treatment. Y  our general health and lifestyle. a few may even be permanent. you should have the chance to discuss the side effects of treatment. That said. Your future health will also be discussed with you at follow-up appointments after your treatment has finished. It is important to know what your risks are. ●  Chance. This is mainly a problem if your ovaries or testes are within the area treated. This will allow them to give you specific advice on what they feel would be best for you. You are more likely to develop certain problems if other members of your close family have had these illnesses. make fertility problems more likely. You may be at risk. Some of these can become long-term problems.

Reduced fertility in women As a woman. If time allows. Your state of mind can play a huge part. inactivity. Do let people know if you are still having problems with fatigue long after your chemotherapy has ended. for many women there isn’t enough time for such procedures before their lymphoma needs to be treated. pain and disturbed sleep. their periods do not return or stay irregular after their treatment has finished. If you have already been treated and are not able to get pregnant naturally. Embryo storage may be possible for some women who are fit enough to undergo the hormonal treatments needed for egg collection. may be available but are still experimental. Fatigue Fatigue. so it is important you get support if needed. is one of the most common longterm problems after lymphoma treatment. the more risk you have of reduced fertility. anaemia and reduced thyroid function – your doctor will be able to check for these. anxiety. For some women. ● Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 3/12 . Other options. which is more than just normal tiredness. you should see a fertility specialist for further advice. such as freezing unfertilised eggs. you should see a fertility specialist before treatment begins if future problems are likely and could be an issue for you. Women closer to the age of normal menopause are more likely to have an early menopause after treatment. Long-term fatigue is more common in people who have other health problems. Talk to your doctor about your fatigue and what could be done to help. For some people it improves with time. Unfortunately. There may also be things you can try to help yourself: try to get more exercise – studies show fatigue is much less common in people who exercise regularly after having lymphoma treatment ● eat well ● get plenty of rest when needed and aim for a good night’s sleep on a regular basis ● accept offers of help with day-to-day tasks and don't worry about the less important things – save your energy for the things you want to do ● try to plan your activities in advance ● make time to see friends and take part in normal social activities. You may find that your periods stop or become irregular when you are having chemotherapy. including heart disease. You might also develop symptoms of the menopause. please ring the helpline if you would like a copy (0808 808 5555). The choices for women who might be affected by reduced fertility after treatment are more limited. but for others it never seems to go away. the older you are when treated. We produce more detailed information on fertility and lymphoma. Other factors that can make fatigue worse include depression.

Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 4/12 . Some people though may continue to have problems or even develop more problems after their treatment has finished. Your doctor or pharmacist might suggest a saliva substitute to help with the problem. tingling or numbness. for a few people they continue and may become permanent. The following tips may help: wear gloves and sturdy footwear for gardening ● wear comfortable shoes and avoid high heels or shoes that are tight ● avoid extreme temperatures. This is more likely in older people or very young children who have been treated with high doses of X-rays to the brain. and platinum-based drugs. They. so less saliva is produced. This is known as ‘cancer-related cognitive disorder’ or sometimes as ‘chemo brain’. This leads to a dry. The problem may continue long term or be permanent for some people. For most people these problems improve in the weeks after treatment. It sometimes causes clumsiness or problems with balance. Neuropathy may also cause constipation. Diabetes can cause similar symptoms so might add to these problems. keep your feet and hands warm because cold may make your symptoms worse ● try gentle massage and exercise your fingers and toes by flexing and stretching them for a few minutes four times a day ● inspect your feet regularly to check for damaged skin in parts that are numb. particularly when it is affecting the central nervous system (the brain and spinal cord). can affect the way your brain functions. Memory problems and confusion Some treatments for lymphoma. may be aware of poor memory or confusion too. in particular vincristine and vinblastine. ● Reduced salivary gland function Radiotherapy to the head and neck can damage the salivary glands. pain and even light pressure on your skin. If you have peripheral neuropathy. or to other treatments such as radiotherapy. You may notice ‘pins and needles’. People having treatment for lymphoma quite often find it harder than normal to concentrate and to think. For most people cancer-related cognitive disorder gets better in the months following their lymphoma treatment. typically in your hands and feet. especially if it is affecting the brain. it may be due to the lymphoma itself.Peripheral neuropathy Peripheral neuropathy is a common side effect of some chemotherapy drugs. it is important you avoid injury to your fingers and toes. In fact. Smoking will make this problem worse. or their relatives. Peripheral neuropathy affects the way you feel temperature. particularly on the soles of your feet and around your toenails. sore mouth and problems with eating. for instance get someone to check your bathwater is not too hot or use a thermometer to do this.

along with some chemotherapy drugs. Early treatment with an antiviral drug can help. Sometimes people may not be aware that they have had an infection until it causes problems. some viruses. In the past. for example previous hepatitis infection. can affect the immune system for many months after they are given. In these studies people were often treated with big doses of radiotherapy given to large areas of the body. Second cancers People who have had treatment for lymphoma are more likely to get certain cancers than people who have not had such treatment. If you would like to talk more about any of these side effects please ring our helpline on 0808 808 5555. as people began to survive longer after lymphoma treatments. can become active after lymphoma treatment and may cause problems. A common example is the herpes zoster virus. which causes shingles when it reactivates. Many studies are also now trying to work out which people have a good chance of cure without having radiotherapy. so they cannot be totally without risk. You should always remind any doctor looking after you about the treatment you have had for lymphoma. There is evidence that this is safer but it won’t be proved for certain until 10 or 20 years have passed. What late effects can develop some time after treatment? The late effects of lymphoma treatment are health problems that can also affect people who have not had lymphoma or any form of treatment. there was often a long time between treatment and the problem appearing. Much of what is known about the higher risks of cancer comes from older studies in people with Hodgkin lymphoma. However. Today smaller doses of X-rays are given and in a much more targeted way. modern lymphoma treatments are designed to limit the risks as much as possible. Positron-emission tomography (PET) scanning is one test that may allow doctors to decide which people will benefit most from radiotherapy. Because doctors have found out about these risks. you still have a higher risk of some infections. Other problems can affect those who have had specific infections in the past. information on late effects often relates to treatments that were given 10 or 20 years ago. This means that though most of your white blood cells (neutrophils) have recovered. Therefore. The problems caused are often more severe in those who have a damaged immune system. particularly fludarabine. doctors noticed that certain problems were more likely after treatment. In particular.Increased risk of viral and other infections Antibody therapies. After having treatment for lymphoma. Clearly though the treatments must still be strong enough to treat the lymphoma successfully. such as rituximab (MabThera®) and alemtuzumab (MabCampath®). you should see your doctor quickly if you develop any symptoms of infection. Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 5/12 . which often stay dormant (inactive) in our bodies.

The risk of breast cancer begins to rise from approximately 10 years after the radiotherapy was given. no lung cancer screening programme in the UK. This is because there is no safe. Skin cancer Both radiotherapy and chemotherapy can increase the risk of skin cancer and other skin problems. Your skin will be more sensitive so keep it covered or protected with a high SPF (sun protection factor) sunscreen. It continues to be high for many more years. You should though be aware if your risk is higher and know the possible symptoms. It is usually done by mammography but a magnetic resonance imaging (MRI) scan may be used if you are under 50. Skin cancers can develop many years after treatment. Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 6/12 .There are a number of other factors that can increase your risk of second cancers. Your chances of developing lung cancer are much higher if you smoke. See your doctor promptly if you have a cough that doesn’t get better. If you smoke. If you are at risk from earlier radiotherapy. The biggest risk factor for this is radiotherapy if the area treated included your breast tissue. ● Breast cancer Treatments for lymphoma can increase your risk of developing breast cancer later in life. See your doctor promptly if you notice any changes in your skin – most skin cancers are easily treated if found early. The increase risk of breast cancer is higher in women who were younger at the time of treatment. particularly in those who were under 25. cough up blood. simple test that would pick up enough early cancers to be worthwhile. The increase risk depends on the dose of X-rays given to the lungs and how much of the lung is treated. Because harmful rays from the sun are known to damage the skin. The risk of lung cancer rises most about 10–20 years after your radiotherapy. you should take extra care in the sun after treatment. or get pain in your chest. at present. your risk will be much lower if you stop. These include: any other lymphoma treatment ● your lifestyle ● your general health ● your age ● your family history. Lung cancer Radiotherapy to the chest can make people more at risk of lung cancer later in life. you should have regular breast cancer screening from 8 years after treatment onwards. feel more short of breath. There is. This is now routine practice following guidance issued by the Department of Health.

Leukaemia and other blood disorders The risk of developing leukaemia is slightly higher from about 3 years after having chemotherapy for lymphoma onwards. Heart disease and stroke Heart disease (sometimes known as cardiovascular disease) is more common in people who have been treated for lymphoma. gums and thyroid gland. This can result in a low blood count. Chest and neck – increase risk of cancer of the oesophagus (the tube leading from your mouth to your stomach). The exact risks will depend on which area of your body has been treated with radiotherapy. Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 7/12 . Your risk is higher if you have had high doses of chemotherapy. These problems become more common 10 years or more after your treatment. particularly when used in high doses. These drugs are part of many regimens used for lymphoma including CHOP and ABVD. The risk of heart disease is also higher after radiotherapy given in the area of the heart. Your doctors will be careful not to prescribe more than the safe dose throughout your treatment. smoking will further increase your risk. It continues to be high until 10 years or more after treatment. Head and/or neck – increase risk of head and neck cancers in later life. as used in stem cell transplants. some people can develop heart problems after their treatment. Another problem that is more common after chemotherapy. This weakens the blood vessels and can cause problems with the blood supply to your heart muscle or brain. You may have tests done before you start treatment to check that your heart is working well. is myelodysplastic syndrome (MDS). Even so. know the possible symptoms and see your doctor promptly about any concerns. including cancers of the mouth. Radiotherapy to your chest and neck may also increase your risk of stroke in later life. most often causing anaemia (a shortage of red blood cells) that may need to be treated with blood transfusions. The chemotherapy drugs most likely to cause heart damage are called ‘anthracyclines’. Your risk of heart disease can be increased by certain chemotherapy drugs and by radiotherapy to an area including the heart. tongue. A few people with MDS will go on to develop leukaemia. This is because radiotherapy can add to any hardening of the arteries. MDS is a condition where the bone marrow no longer makes enough healthy blood cells.Other cancers The risk of a number of other cancers may also be higher after treatment for lymphoma. It is well known that they can cause weakness of the heart muscle but they are important to successful lymphoma treatment. Abdomen – increase risk of bowel cancer. Again it is important you are aware of your risks.

Radiotherapy given to the neck can damage the thyroid gland and reduce the amount of thyroxine made. Lung fibrosis (scarring) Lung fibrosis is the medical term for damage to your lungs through scarring. You might be more sensitive to cold and gain weight easily too. It can be caused by radiotherapy to the chest and by some chemotherapy drugs. Your risk of heart disease and stroke depends on many other factors too including: smoking ● high blood pressure ● diabetes ● family history ● obesity ● high blood cholesterol levels. It can be diagnosed by a simple blood test in your GP surgery and is easily treated with thyroxine tablets. Some people may find it makes them short of breath and they will be able to do less exercise than before. Lung fibrosis. including bleomycin – used in ABVD. Reduced thyroid function The thyroid gland is located in the lower part of the neck and makes a hormone called thyroxine. There is also an increased risk of developing thyroid cancer many years after radiotherapy to the neck. once it develops. ● Taking good care of yourself. The risk of developing hypothyroidism is higher in the first 5 years after treatment. but continues for many more years. If mild it can be seen on X-rays or scans but will not cause you any symptoms. If it happens a long time after your radiotherapy you might no longer be seeing your lymphoma consultant. A lack of thyroxine in the blood is called hypothyroidism. overdoing things. and checking for diabetes and high cholesterol. not exercising. Thyroxine helps control your body’s metabolism. you should tell the anaesthetist about it. Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 8/12 . is usually permanent. It is important therefore that this problem is not forgotten if you are at risk. Hypothyroidism can be difficult to detect because the symptoms are often blamed on something else – getting old. making it work at the right pace. maintaining a healthy weight and giving up smoking will help limit your risk of heart disease and stroke.How much your risk increases depends on the dose of radiotherapy given and the precise treatment area. If you have been treated with bleomycin and you need to have an operation in the future. You should also see your doctor for advice about monitoring your blood pressure. A lack of thyroxine will slow your metabolism making you feel tired a lot of the time.

Make a note of anything that concerns you between appointments. do remember to give your new address details to your hospital. These appointments give you and your consultant the chance to identify problems and discuss what can be done about them. It is important that you have regular check-ups with your dentist after radiotherapy. Some hospitals will give you a record of all this information once you have finished treatment. make sure you know your risks and exactly what treatment you had and when. do see your doctor and remind them of the treatment you’ve had. It can also help to keep a note of what you should look out for. What can I do about possible late effects? If you have been successfully treated for lymphoma. especially if you need any dental treatment. Find out what symptoms you should be aware of. Find out if there is anything you can do to protect your long-term health. ●  Get to know what is normal for you. If you move house in the future. In certain people. They are also at increased risk of developing cataracts in the future.Poor dental health Radiotherapy to the head and neck can lead to an increased risk of tooth decay. You should tell your dentist that you have had radiotherapy to the head and neck. ●  Get information before you are discharged. The risk of developing cataracts is also higher for people treated with high doses of steroids – used alongside chemotherapy to treat some lymphomas. dentist or optician. Be aware of your body and how you usually feel. It is important that you visit your optician regularly because they will be able to check for early signs of these conditions. when you have been discharged from follow-up. ● Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 9/12 . These steps may help you take care of yourself:  Find out what your risks are. even if it’s hard to put your finger on it. ●  Ask about late effects clinics. Finding problems earlier though can often make them easier to treat. If your doctor says you can be discharged. Some hospitals will have ‘late effects clinics’ to monitor people at particular risk for a longer time – such as those who have had a stem cell transplant. If you think something is not right. If you are worried and your appointment is a long way off. You should tell your optician about the lymphoma treatment you have had. ● A  ttend your follow-up appointments. it may not be possible to prevent all health problems later in life. Some late effects may happen many years later. Monitoring and treatment of late effects are an important part of your follow-up after treatment – you should make every effort to attend. steroids can also bring on glaucoma – a condition that often runs in families which can cause loss of vision. such as having regular check-ups with your GP. Check exactly what your treatment involved and what your individual risks are. ask for an earlier appointment or talk to your GP. Eye problems People who have had radiotherapy to an area including the eyes may suffer with dry eyes.

● - You will be advised to begin breast screening earlier if you have a higher risk of breast cancer. Preventing second cancers If your treatment has given you a higher risk of cancer in the future. No one can know what will happen in the future. - There is no screening programme for lung cancer at present. Making changes to your lifestyle could reduce your risks in the future: ● - stop smoking - eat a healthy diet including lots of fruit and vegetables - take regular exercise and maintain a healthy weight - don’t drink more alcohol than the recommended safe limit - protect your skin from the sun. - Ask your consultant about cancer screening. Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 10/12 . - Bowel cancer screening is now offered to people in their 60s and can be requested by people over 70.  Follow a healthy lifestyle. - Cervical screening is offered to women aged 25–64 years. but a healthy lifestyle now gives you the best chance of a healthy future. The following tips could make this more likely: ● - know what cancers you might be at risk of - find out about these cancers and what the symptoms are - find out when they are most likely to happen to you - report any symptom that worries you promptly. Find out if you should be screened for some cancers in a different way or earlier than other people. it is important you attend when invited. Avoid adding to your health risks by: ● - eating a healthy diet - maintaining a healthy weight - taking regular exercise - giving up smoking. Screening programmes are specifically designed to find cancers early. there may still be things you can do to limit the risk. Cancers are usually more easily treated if found early.

uk Leukaemia & Lymphoma Research  020 7504 2200  info@beatingbloodcancers. NHS Cancer Screening Programmes www. et al. 2011. Human Reproduction Update.A final note We now know much more about the late effects of lymphoma treatment than was known in the Long-term endocrine side effects of childhood Hodgkin’s lymphoma treatment: a or telephone 01296 619409 if you would like a copy. 117: 1806–1816. If you are someone who was treated in the past. if you are being treated today. Hematology: American Society of Hematology Education Program. 18: 12–28. Detecting problems early – possibly as part of a formal screening programme – means they are likely to be more easily dealt with.cancerscreening. 9am–5pm)  via website www. consultant haematologists at Newcastle Hospitals NHS Foundation www. for their assistance in reviewing this article. Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 11/12 . Hopefully.cancerhelp. Acknowledgement We would like to thank Professor Graham Jackson and Dr Gail Jones. 2012. Morbidity and mortality in long-term survivors of Hodgkin lymphoma: a report from the Childhood Cancer Survivor van Dorp W. Newcastle upon Selected references The full list of references is available on request. Castellino SM. understanding your risks now allows you and your doctors to be on the 2011: 323–329. et al. Hodgson DC. The treatment of lymphoma has changed over the years based on what doctors know about late effects. If you would like to talk more about living with lymphoma or the late effects of lymphoma treatment. please ring our helpline (0808 808 5555). Please contact us via email (publications@lymphomas.leukaemialymphomaresearch. Useful sources of further information about late effects of cancer treatment Cancer Research UK  0808 800 4040 (Monday–Friday. Blood. you will be less at risk of future health problems than people treated in the past. Late effects in the era of modern therapy for Hodgkin lymphoma.

Bucks. Please visit www. you should consult your doctor.lymphomas. Please see our website (www. 27: 960– 2011. Bellizzi or email Pirani M. 2011. How we can help you We provide: a freephone helpline providing information and emotional support  0808 808 5555 (9am–6pm Mondays–Thursdays. If you are concerned about your health. which is constantly changing. 9am–5pm Fridays) or  information@lymphomas. et al. Risk for second malignancies in non-Hodgkin’s lymphoma survivors: a meta-analysis.lymphomas. © Lymphoma Association PO Box 386. Physical activity and quality of life in adult survivors of non-Hodgkin’s lymphoma. 22: 1845–1858. American Journal of Medicine.lymphomas. We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research. Journal of Clinical Oncology. et al. et al. Aylesbury. The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites which we link to.Lanini S. 1068395 Updated: May 2013 Next planned review: 2015 Late effects of lymphoma treatment LYM0054/LateEffects/2013v3 12/12 . How you can help us We continually strive to improve our information resources for people affected by lymphoma and we would be interested in any feedback you might have on this article. Thompson ● ● the opportunity to be put in touch with others affected by lymphoma through our buddy scheme a nationwide network of lymphoma support groups. 124: 1106–1112. BMC Medicine. Risk of infection in patients with lymphoma receiving rituximab: systematic review and meta-analysis. Annals of 2009. Alternatively please phone our helpline on 0808 808 Care of the adult Hodgkin lymphoma survivor. et al. ● ● information sheets and booklets about lymphoma (free of charge) ● a website with forums – if you have any for more information about how we produce our information. HP20 2GA Registered charity no. 9: 36.