Treatment for lymphoma nowadays is generally successful. Most people live for many years after their treatment has finished. Most people recover well from their treatment although some side effects can be long-term (take months or years to resolve) and a few may be permanent, such as reduced fertility.
Some people have health problems that first appear months or years after treatment has finished – these are known as ‘late effects’. You may hear people refer to these problems as having a ‘delayed onset’, which means they don’t appear while you have treatment or immediately afterwards.
As people survive longer after their treatment for lymphoma, certain health concerns, like heart problems or second cancers, are slightly more likely to happen in people who had been treated for cancer than in the general population. However, there has often been a long time between treatment ending and the problem appearing.
It takes many years before doctors can know what late effects a treatment can have, if any. Modern lymphoma treatments are designed to limit the risks of future health problems. The treatments used today are expected to have a much lower risk of late effects than those we describe. However, this can only be confirmed after the treatments have been used for several years.
No treatment is without risk as it must be strong enough to treat the lymphoma successfully.
How to find out more about the risks of treatment
Before your treatment begins, talk to your medical team about both the short-term and long-term risks of your treatment plan. Your doctor’s main concern is to treat your lymphoma successfully while minimising unwanted side effects.
As modern treatments are designed to reduce the risk of late effects as much as possible, fewer people should now be affected by health problems related to their lymphoma treatment. Research continues in order to understand how best to tailor treatments to each person to reduce the risk of long-term and late effects.
The risk of late effects may seem worrying, but being aware of potential problems gives you the best chance of successful treatment of any problems that occur.
There are some simple steps you can take to help look after yourself:
- Talk to your medical team about the risks of your treatment before it begins.
- Ask what symptoms you should look out for.
- See your doctor promptly if you have any concerns.
You know your own body best. If you are worried about any symptoms you are having, talk to your medical team. If you have been discharged from lymphoma follow-up, see your GP. If you are still worried, you may wish to be referred back to your lymphoma team.
If you are under 18 or your child has been treated for lymphoma, you might find our page on side effects and late effects in children useful.
Your risk of late effects depends on a number of different factors, known as ‘risk factors’.
Risk factors relate to the lymphoma you had, the treatment you had and individual factors:
- Lymphoma-related risks: the type of lymphoma you had, where it was growing and the organs and tissues it affected.
- Treatment-related risks: the specific drugs and types of treatment (eg chemotherapy or radiotherapy) you had, the dose and schedule of treatments, and how many different treatments you had.
- Individual risks: your age, any health problems you had before your treatment for lymphoma, your genes and family history as well as your lifestyle.
Having risk factors doesn’t mean you will develop late effects. Many people have no late effects from their lymphoma treatment despite being at higher than average risk.
The most common late effects that occur in people treated for lymphoma are described in relevant sections by type of treatment:
- late effects of chemotherapy
- late effects of radiotherapy
- late effects of newer, targeted therapies.
If you have been treated with a single type of therapy only, you might want to read only the section that applies to that type of treatment.
Some late effects aren’t linked to a particular type of treatment. If you’ve had Hodgkin lymphoma, you are at an increased risk of developing non-Hodgkin lymphoma (NHL). It is not clear why this is. We have more information about many types of NHL, which you might find useful if you have been diagnosed with NHL as a second cancer.
Different chemotherapy drugs have different potential late effects. Your doctor should give you more information about the exact drugs used in your treatment.
Cancer Research UK have information on the side effects of individual drugs used in cancer treatment.
If your lymphoma comes back after treatment, it is called a ‘relapse’. If you develop a different type of cancer after treatment for lymphoma, this is called a ‘second cancer’.
Chemotherapy can increase your risk of some types of cancer, particularly if you have high dose therapy.
Second cancers that have been linked to treatment with chemotherapy for lymphoma include:
- Leukaemia – particularly acute myeloid leukaemia (AML), which can develop on its own or after you have first developed myelodysplastic syndrome (MDS – where your bone marrow no longer makes enough healthy blood cells). If you would like more information about MDS, NHS Choices have an overview. You can find more information on AML from Cancer Research UK.
- Lung cancer – a small increase in the risk of lung cancer has been linked to some chemotherapy drugs grouped as ‘alkylating agents’, like mechlorethamine. This risk is much higher if you are a smoker and continue to smoke throughout and after your treatment.
- Skin cancer – some chemotherapy drugs can cause skin problems such as rashes and sensitivity to the sun. They can also increase your risk of skin cancer. Make sure you protect your skin from the sun. The British Association of Dermatologists have more information on what to look out for and how to protect yourself against skin cancer.
An increased risk of developing cancer usually persists for many years and second cancers are most likely to develop several years after your lymphoma treatment had finished.
Standard chemotherapy regimens (combinations of drugs) for Hodgkin lymphoma have changed in recent years. The ABVD chemotherapy regimen (combination of drugs) commonly used for Hodgkin lymphoma has a lower risk of causing a second cancer than regimens used in the past as it does not include alkylating agents.
Chemotherapy drugs called ‘anthracyclines’, like doxorubicin, may increase your risk of heart problems. They are part of many chemotherapy regimens used for lymphoma including CHOP and ABVD. It is well known that they can damage heart muscle, so that it can’t pump strongly enough, but they work well for treating lymphoma. Your risk of heart problems increases with higher doses or more courses of treatment with anthracyclines.
Your doctors have to balance the possible risk of heart problems with giving you the most effective treatment for your lymphoma. You may also have tests to check that your heart is working effectively before you start treatment.
Heart problems become more common 10 years or more after your treatment but can occur sooner. Your risk of heart problems stays higher than usual for a number of years.
The British Heart Foundation have more information about heart problems. They also offer advice on keeping your heart healthy.
Some types of chemotherapy can cause damage to your lungs. The damage is a result of fibrosis (scarring).
One of the chemotherapy drugs that can cause lung problems is bleomycin. This drug is commonly used for Hodgkin lymphoma as part of the ABVD regimen.
Once it develops, lung fibrosis is usually permanent. If the damage is mild, it can be seen on X-rays or scans, but does not cause you any symptoms. More damage can cause symptoms like shortness of breath. If you are affected, you might not be able to do as much exercise as you used to.
If you have been treated with bleomycin and you need to have an operation in the future, you should tell the anaesthetist about it.
Doctors are looking at ways to reduce the risk of lung problems after treatment for lymphoma. Clinical trials of people with Hodgkin lymphoma suggest that bleomycin can be dropped for future cycles in some people who had a good response to their first 2 cycles of ABVD. In initial results from the trial, dropping bleomycin didn’t affect the outcome for these people.
Other late effects of chemotherapy
There are some other uncommon late effects of chemotherapy.
Some types of chemotherapy, especially at high dose, could increase the risk of problems with your teeth if you don’t look after them properly. Follow your dentist’s advice to keep your teeth healthy.
The risk of developing eye problems, eg cataracts (cloudy patches in the lens of your eye that reduce your vision), is also higher if you have been treated with high doses of steroids. These are used alongside chemotherapy to treat some lymphomas. In certain people, steroids can also cause glaucoma. This can result in a loss of vision because of the build-up of pressure in the eye.
It is important that you visit your dentist and optician regularly. Tell them about the lymphoma treatment you’ve had.
The potential late effects of radiotherapy depend greatly on what area of your body was treated. We describe the most common late effects of radiotherapy in the following sections. Your doctor should give you more information on the risks associated with your specific treatment plan.
If your lymphoma comes back after treatment, it is called a ‘relapse’. If you develop a different type of cancer after treatment for lymphoma, this is called a ‘second cancer’.
A higher risk of second cancer related to radiotherapy persists for at least 25 years after the start of treatment. Much of what is known about the risks of second cancers comes from older studies in people with Hodgkin lymphoma. People with Hodgkin lymphoma used to be treated with high doses of radiotherapy given to large areas of the body. Nowadays, smaller doses of radiotherapy are given in a more targeted way. However, researchers are unable to say for certain if these approaches are safer until they have been used for many years.
It is not as common for people treated for non-Hodgkin lymphoma (NHL) to have radiotherapy so there are fewer studies on its effects in people with NHL. However, if you’ve had radiotherapy as part of your treatment, the same advances in more precise targeting of smaller doses of radiotherapy apply to you, too.
The type of second cancer you are most at risk of depends on the area of your body that has been treated with radiotherapy. If you’ve had radiotherapy, ask your specialist what cancers you are at higher risk of developing. Make sure you know the symptoms of these cancers. Cancer is usually more treatable if diagnosed early.
If you’ve had radiotherapy to the chest, you are at increased risk of developing:
- breast cancer
- lung cancer
- cancer of the oesophagus (the tube leading from your mouth to your stomach).
Your risk of lung cancer is further increased if you smoke. Consider quitting to moderate this risk.
It is routine practice in the UK for women who were under 30 when treated with radiotherapy to the breast area to have breast cancer screening. This is because your risk of developing breast cancer is highest if you were under 25 when you received radiotherapy.
Screening is offered from the age of 30 or from 8 years after radiotherapy, whichever is later. Screening can detect breast cancer at an early stage, allowing the best chance of successful treatment.
NHS Choices has more information on breast cancer screening. You might also want to read the NHS’s leaflet on screening for women at higher risk of breast cancer.
Radiotherapy to other areas increases your risk of some types of cancer:
- radiotherapy to the head and/or neck increases your risk of head and neck cancers, including cancers of the mouth, tongue and thyroid gland
- radiotherapy to the abdomen (tummy) increases your risk of bowel cancer and other cancers of the digestive system, eg pancreatic cancer and stomach cancer.
You also have a higher risk of skin cancer in the area treated by radiotherapy. Protect your skin from the sun.
The British Association of Dermatologists have more information on what to look out for and how to protect yourself against skin cancer.
Heart disease and stroke
Radiotherapy to the chest can cause heart problems, including abnormal heart rhythms and damage to your heart valves or muscle. Hardening of your arteries can also happen. Radiotherapy to the neck might also cause hardening of your arteries. This can affect the blood supply to your brain, increasing your risk of stroke.
You may have tests to check that your heart is working effectively before you start treatment. Nevertheless, you may still develop heart problems after treatment. The risk of developing heart problems is increased with higher doses of radiotherapy. Your doctors have to balance the potential risk of heart problems in the long-term with giving you the most effective treatment for your lymphoma.
Heart problems become more common 10 years or more after treatment but can occur sooner. Your risk of heart problems stays higher than usual for many years. It is important that you are aware of this continuing risk and follow lifestyle advice to keep your heart healthy.
The British Heart Foundation have more information about types of heart problems. They also offer advice on keeping your heart healthy.
The thyroid gland produces hormones that regulate the speed at which the cells in your body work. It is found in the middle and front of the neck, so it is always exposed during radiotherapy to the neck. It is common for the thyroid gland to become underactive as a result. This is called ‘hypothyroidism’ and makes the cells in your body slow down. It can be diagnosed by a blood test.
You might feel tired a lot of the time and be more sensitive to cold. You could gain weight, too. These symptoms can be hard to detect and can be caused by other things. It is important that you know that these symptoms could be a sign of thyroid problems, so you can seek medical advice.
If your thyroid gland is affected by radiotherapy, problems might not develop for some years after you finish your treatment. The risk of developing hypothyroidism is higher in the first 5 years after treatment, but remains increased after that time.
You should be given regular thyroid function tests. Tell any doctors treating you that you’ve had treatment for lymphoma, so they are aware that you are at greater risk of thyroid problems. If you think you might be affected by thyroid problems and are no longer being followed-up by your lymphoma specialist, talk to your GP.
Tablets to replace thyroid hormones can correct hypothyroidism completely. You need to take these for the rest of your life.
There is also an increased risk of developing thyroid cancer many years after radiotherapy to the neck.
Effects on growth
Radiotherapy can affect the growth of bones and soft tissue in the area that has been treated. This is an important consideration in children and adolescents who are still growing. The effects on growth become apparent only several years after treatment. Our information for parents of children affected by lymphoma describes this and other late effects that might happen in children.
Other late effects of radiotherapy
Other possible late effects of radiotherapy include:
- lung problems: radiotherapy to the chest can cause damage to your lungs. The damage is a result of fibrosis (scarring).
- dental problems: radiotherapy to the head and neck can lead to an increased risk of tooth decay. Follow your dentist’s advice to keep your teeth healthy.
- eye problems: if you’ve had radiotherapy to an area that includes the eyes, you might have dry eyes. Should this apply to you, there are treatments that can help. You are also at increased risk of developing cataracts (cloudy patches in the lens of your eye that reduce your vision) in the future.
Tell anyone treating you, including your dentist and optician, about the treatment you’ve had for lymphoma.
There are many newer, targeted treatments being used for lymphoma. Scientists can only know for certain whether these treatments cause late effects many years after they have been in widespread use. However, so far, these treatments are generally expected to cause fewer side effects than chemotherapy and fewer late effects than other types of treatment, including chemotherapy and radiotherapy.
Research so far has shown that the new targeted drug brentuximab vedotin might contribute to lung damage, particularly if given in a regimen with bleomycin.
Monitoring your health and how well you are recovering from treatment is an important part of your follow-up after treatment. Your medical team can advise you what you can do to reduce your risk of developing late effects and what to look out for. You can’t always stop late effects from developing but catching problems early gives you the best chance of being treated successfully. If you have any health problems, talk to your medical team.
Be aware of your risks – look out for symptoms
- Find out what your risks are – ask your medical team exactly what treatment you’ve had and what your individual risks are. Keep this information in case you need it. Late effects can occur many years after treatment, when you might have been discharged from follow-up.
- Find out what symptoms you should be aware of.
- Ask what cancers you are at higher risk of developing and when the risk is highest – cancers are usually more treatable if diagnosed early. Make sure you know the symptoms of these cancers.
Monitor your health to find problems early
- Attend your follow-up appointments – monitoring and treatment of long-term and late effects is an important part of your follow-up after treatment. Make a note of any concerns to discuss at your appointments. Ask for your appointment to be brought forward if you are worried.
- Get to know what is normal for you – be aware of your body and how you usually feel. If you think something is not right, visit your GP or contact your lymphoma specialist.
- Have regular check-ups with your dentist and optician.
- Ask your lymphoma specialist or GP about cancer screening – screening programmes are specifically designed to find cancers early.
Find out if you should be screened for some cancers in a different way or earlier than other people. There are screening programmes for breast, bowel and cervical cancer – find out more from NHS Choices.
Follow a healthy lifestyle – give yourself the best chance of a healthy future
- eat a healthy diet and maintain a healthy weight
- exercise regularly
- give up smoking
- drink alcohol within recommended limits
- protect your skin from the sun.
Read our section on living with lymphoma for more information on how to look after yourself.
Macmillan Cancer Support and NHS England have set up the National Cancer Survivorship Initiative to help people live healthy and active lives with and beyond cancer. You can find out more from their website.
Tell any doctor looking after you about the treatment you have had for lymphoma. They need to be aware that you might be at increased risk of developing some health problems.
Research into reducing the risk of late effects
Treatment of lymphoma has changed over the years based on what doctors know about late effects. If you are being treated today, you should be at a lower risk of future health problems than people treated in the past. If you had treatment many years ago, understanding your risks now allows you and your doctors to monitor your health closely. Detecting problems early – including through formal screening programmes – means they are likely to be more easily dealt with.