Living with skin lymphoma

Skin (cutaneous) lymphoma can be difficult to live with because it can take months or years to diagnose, symptoms can come and go, and several courses of treatment may be needed. It can be a long-term condition, so you may be living with it for many years. This page offers practical advice and support to help you live well with skin lymphoma. If your symptoms are troublesome, you might also find our page on managing symptoms of skin lymphoma helpful.

On this page

Your feelings

Your relationships

How to help yourself

Complementary therapies

Day-to-day life

Supporting people with a skin lymphoma

Your feelings

A diagnosis of cancer, even one that you can live with for years or decades, is a significant event in a person’s life. Everyone deals with it in a different way. You are likely to have good days and bad days. Sometimes your mood might change suddenly and for no obvious reason.

You might not feel the same way as someone else with a skin lymphoma. People around you may also be affected, but their reaction might be different to yours. We mention some of the most common feelings in this information sheet. Don’t expect to experience all of them and don’t expect them in any particular order. These feelings are a natural response and they do not mean you’re going mad or failing to cope.

Your feelings about having skin lymphoma

When you are first diagnosed with lymphoma, you may feel shocked and numb. It may feel as though this is happening to someone else and it can take weeks, even months, for the reality to sink in. Grief for the loss of good health and control over life is not unusual. You may feel concerned for the people close to you and about how your situation is affecting them. You may be irritable and short-tempered and take it out on people closest to you.

You may feel scared about what happens next: the appearance of your skin changing, having any pain, even whether you may die from the lymphoma. You may be frightened about having to go to hospital or what the treatment may be like.

It can be very easy to blame yourself or someone else for your situation. It is understandable to want an explanation for why you have lymphoma. Scientists don’t know exactly what causes skin lymphoma. Research has shown that it is not caused by anything you have or haven’t done.

It is natural to want to be on your own from time to time. Explain this to the people close to you, so they don’t take it personally and can support you. Note that if you feel withdrawn for weeks or months, you might be affected by depression. Depression is an illness that requires treatment and support for you to make a full recovery.

If you feel you could be affected by depression – or if people close to you are worried that you might be – don’t be embarrassed to talk to your medical team or GP about it. There are also organisations that can help you cope with depression and other mental health issues, such as MIND.

You might find it difficult to accept that anything is wrong. You might not want to discuss your illness. Carrying on as before may be the way you feel able to cope, but it can be difficult for people around you. It may help them if you explain that you are not ready to talk about your lymphoma.

People may tell you to be ‘positive’. There will be times when you don’t feel positive. You may experience a range of emotion, including anger. Acknowledging and expressing your feelings can make it easier for you to come to terms with your situation.

Some people find that going through emotional difficulties makes them stronger. People often say that a serious illness has helped them to appreciate the things that are important to them. Many people treat their illness as a challenge and find a strength that they didn’t know they had.

Living on ‘watch and wait’

If you have a slow-growing skin lymphoma, you might not have treatment straightaway, but you might be monitored instead. Doctors call this approach ‘watch and wait’. Having cancer and not getting treatment can be difficult to deal with. It can be hard to believe that having no treatment is the best option. Uncertainty about the future can make you feel anxious and unable to enjoy your relative good health.

Keep in mind that early-stage (localised) disease is slow to develop and is not life-threatening. It would not benefit from treatment. Remember that your doctor is keeping treatment in reserve, should you need it in the future.

Your feelings about how your skin looks

Changes in the appearance of your skin might be as difficult to cope with as the cancer diagnosis itself. As a society, we put great emphasis on appearance and we tend to make judgements about people on the basis of their looks. A change to your skin can affect your self-confidence.

You may be embarrassed about how your skin looks to other people. You may worry that people think your skin problem is a reflection of your lifestyle, diet or standards of cleanliness. You may worry they think they might catch it. You can begin to overcome these feelings by recognising why you feel embarrassed. You can also learn to help people understand why your skin looks the way it does.

Facial expressions and eye contact are important aspects of communication. If you are embarrassed about how you look, you might find it harder to talk to people. Managing socially is challenging for anyone with a skin condition. Some people can find it difficult to know how to react to you. Remember that your close relationships are based on your personality, behaviour, shared interests and sense of humour. Your family, friends and colleagues will get used to how you look. Explain to them about your lymphoma and let them ask questions. Talking about skin lymphoma can prevent it from becoming a source of awkwardness and can help you to feel more at ease in one another’s company.

You may feel more awkward with people you meet for the first time or who don’t know you well. Avoiding eye contact or avoiding the subject might draw their attention to your skin. Have an explanation ready for people who ask about your skin or who make an insensitive remark. Take the initiative to stop people jumping to the wrong conclusions by explaining about your condition. Being assertive makes a good first impression on the people you meet. It takes their focus away from your skin.

Changing Faces, a charity for people who are living with skin conditions that affect their appearance, produce booklets on coping with changes in how you look.

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Your relationships

Having cancer can be a lonely experience. You might feel cut off from people. Most people have never heard of lymphoma, let alone skin lymphoma, and this might make you feel particularly isolated. You may feel angry and frustrated with people carrying on with their lives.

People close to you may have difficult feelings about your illness, too, and these may not be the same as yours. Your friends may change the subject if you talk about your illness. They might make light of what you are going through. Try to understand that it can be difficult to know what to say to someone who is ill. Your friends might be embarrassed or want to cheer you up.

The stress of a serious illness can make relationships difficult. You and your partner may argue over little things and any problems in your relationship may seem more difficult to cope with. You may, however, find that relationships become stronger through the challenges of living with lymphoma. Difficult times can allow people close to you to show their care and support. They can make people realise how important they are to each other. You can help to protect your close relationships by:

  • being honest with people you are close to
  • letting people know how you feel
  • letting people help
  • enjoying the good things with other people in your life.

Talking to children

It can be very difficult to know what to say to your children about your lymphoma. You might be tempted to protect your children from your illness and its treatments. You might try to pretend that nothing is wrong.

For most children, it is best if you are open and honest. Children are likely to know that something serious is going on. Very often, what a child imagines is worse than reality. Your child might even blame themself for your illness. Keep your children informed of what is happening and reassure them that your illness is not their fault and that they cannot catch it. You may be surprised at how much they can cope with and how much they understand.

Sex and fertility

There is no reason to stop having sex because you have lymphoma. However, it is not unusual for you or your partner to have sexual difficulties. There are a number of possible reasons for sexual problems, including:

  • feeling uncomfortable or unwell
  • feeling stressed, anxious, tired
  • being affected by depression
  • loss of confidence
  • feelings about the lymphoma or skin appearance.

These factors can affect both you and your partner.

You might also find sex uncomfortable while you are on some treatments. For example, women may have vaginal dryness. Using a water-based lubricant can help relieve it. In addition, if you have thrombocytopenia (a low platelet count) while you are on chemotherapy, you are at a higher risk of bruising. Ask your medical team whether your treatment has any side effects that could affect you sexually. They can offer advice on how to cope with them.

It is quite common to lose interest in sex during cancer treatment. Try to talk to your partner about how you are feeling. Discuss other ways of showing affection – explore physical intimacy that does not involve having sex.

If sexual difficulties persist, and you and your partner want to address them, talk to your medical team or your GP. They may be able to refer you to a counsellor who is trained to help people with sexual problems related to cancer.

Contraception and barrier protection

Traces of chemotherapy drugs might remain in your body for a few days following treatment. Some experts suggest this can last for up to 5 days. Avoid exposing your partner to your bodily fluids during this time. For example, avoid oral sex and use a condom.

Doctors advise that women don’t become pregnant when on chemotherapy and for some time afterwards. Your doctor should advise you what precautions to take. Being pregnant makes it more difficult to treat lymphoma and the drugs may harm a developing baby. Continue to use reliable contraception during chemotherapy treatment, even if your periods have stopped temporarily.

Men shouldn’t father a child during chemotherapy and for 2 months afterwards. Some doctors recommend waiting for up to a year. This is to make sure that there are no traces of drugs left in the body that can damage developing sperm.

Reduced fertility

Some treatments for lymphoma can affect fertility, particularly some chemotherapy drugs and radiotherapy to the groin or pelvis. Your specialist should tell you whether your treatment might affect your fertility before your treatment starts. Ask your medical team if you have any concerns.

It may be possible for you to take measures to preserve your fertility. Discuss with your doctor whether this is possible for you before your lymphoma treatment starts.

Preserving fertility for men: having lymphoma might lower your sperm count and some treatments can reduce it further, particularly chemotherapy. Fertility treatment can mean that having a baby is still possible, even with very few sperm in the sample. It is now relatively easy for men to store sperm for later use.

Preserving fertility for women: the risk to your fertility depends on your age at the time of treatment and on the type and dose of chemotherapy drugs you are given. If you are close to the normal age for menopause, you are more likely to have fertility problems or have early menopause. Your specialist should tell you if your fertility is likely to be affected. Some centres offer storage of fertilised embryos before treatment begins. These can be used for in vitro fertilisation (IVF) later on.

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How to help yourself

Managing symptoms is only one aspect of living with a skin lymphoma. A balanced diet, regular exercise, and getting enough sleep are just a few things to consider to help yourself feel well.

Diet and nutrition

Eating healthily is important. A balanced diet can help you to feel well and ease side effects of treatment, including fatigue.

You are likely to need more energy from your diet when you have lymphoma. The lymphoma and some of its treatments use extra energy. You also need more energy if you get an infection. Foods containing starch, sugars or fats are good sources of energy. Try potatoes, rice, pasta, biscuits, butter and cream.

You may also need more protein, particularly after treatment. Protein is important for healing the body and building new cells. Good sources of protein are meat, fish, milk, cheese, eggs, nuts, beans and pulses.

During treatment you may find that you lose your appetite or that side effects make it difficult to eat well. There are adjustments that you can make to your diet to help with these problems. You may find it helpful to talk to your nurses or to the hospital dietitian. Your doctor can prescribe food supplements (meals in a drink) if you need them.

You might hear about special ‘cancer diets’. Be suspicious of any diet that claims to cure cancer. There is no scientific evidence to suggest that a particular diet cures lymphoma.

Exercise

Regular light exercise can make a big difference to fatigue. It can help you recover from treatment, sleep well and lift your mood. Even though you may not feel like it, small amounts of regular exercise help you feel stronger and give you more energy. Try doing some stretching exercises or going for a short walk.

People with skin lymphoma should take some precautions when they exercise. For example, have a fresh-water shower after swimming in chlorinated pools to prevent skin irritation. Make sure to protect yourself against the sun if you are exercising outside, especially if you are having phototherapy (for example PUVA). Ask your medical team if there are any other precautions you need to take because of your particular symptoms or treatment.

Talk to your doctor about whether it is safe to carry on with your usual exercise routine if you are having chemotherapy or rituximab. Your blood counts may affect the type of exercise that is safe for you. A swimming pool, for example, might expose you to germs, which could cause an infection if you have neutropenia (low white cell count). Strenuous exercise, such as jogging or squash, may increase your chances of getting bruises if you have thrombocytopenia (low platelets).

Giving up smoking

If you smoke, consider giving up. Giving up smoking reduces risks of some of the long-term side effects of treatments. GP surgeries and pharmacies are good sources of information and support for people who want to stop smoking. Some GPs offer support groups and professional assistance.

Getting enough sleep

It can be very difficult to sleep if you are worried, if your skin is itchy, or if you have fatigue as a result of the lymphoma or treatment. Try to maintain a regular sleeping routine. Keep daytime naps short and don’t nap late in the afternoon. Go to bed at a similar time each night and minimise distractions when you go to sleep. Having a warm bath with emollients or having a warm milk drink before bed can help. Relaxation techniques and breathing exercises may also help.

Sometimes treatment (such as steroids) can make it more difficult to sleep and you may need to discuss this with your medical team. They can give you tips, such as timing your medication, to reduce its impact on your sleep.

Managing stress

Think about other causes of stress in your life and see if you can make any changes. People often say that stress makes their symptoms worse. Perhaps you are doing too much and need to reduce your responsibilities. Maybe your finances are worrying you and need to be reviewed. Maybe you could do with more help looking after children, grandchildren or ageing parents. Even small changes in your workload or home responsibilities can make a difference to your skin, wellbeing and ability to cope with your lymphoma and treatment. You might find complementary therapies, meditation or yoga helpful in relieving stress.

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Complementary therapies

Complementary therapies aim to treat your mind, spirit and body but not your illness. They should not claim to cure lymphoma – be suspicious of any that do. They should not be used instead of your hospital treatment but can be used alongside it.

Complementary therapies can help you to feel better, more in control of your life and more able to cope with your feelings. They can reduce stress and anxiety, help you to sleep and feel more relaxed. Making time for complementary therapies gives you an opportunity to take time out and focus on feeling better.

No single therapy is particularly effective for people with lymphoma. Find out what appeals to you and what you feel comfortable with. Some hospitals offer complementary therapies, but generally people have to make their own arrangements. You are likely to have to pay for the therapy.

Make sure to choose a therapist who is suitably qualified, preferably someone registered with the appropriate professional organisation. Tell the practitioner that you have lymphoma and give them information about your treatment.

Some complementary therapies might not be suitable for people with a skin lymphoma or during a particular type of treatment. Speak to your specialist before you have any complementary therapy so that they can advise you whether it is safe for you.

Herbal creams or massage oils can irritate dry, broken or inflamed skin. Nearly all herbal remedies can cause an allergic reaction and some can make the skin extra-sensitive to sunlight or PUVA. Some herbal medicines (in particular, Ayurvedic remedies) contain arsenic or mercury, which can cause skin problems. Many Chinese herbal medicines have been found to contain steroids, which also affect the skin. Other herbal therapies that cause skin side effects are St John’s wort, kava, aloe vera, eucalyptus, camphor and henna. It is important not to use these products.

A list of remedies and their potential side effects can be found on CRUK’s website.

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Day-to-day life

Your illness may affect your daily life. Its impact depends on the type of skin lymphoma you have, and whether you are having treatment. If you have early-stage, slow-growing lymphoma, you might find that it doesn’t change things too much, especially once you have come to terms with your diagnosis.

Hobbies, interests and social life

Make time for things you enjoy. You may have a hobby that you could make more time for. Perhaps you could find a new interest that gives you pleasure and takes your mind off things. Set achievable goals. New interests or plans shouldn’t become an additional stress.

Maintain your social life as far as possible. Getting out, changing the scene, seeing a film or enjoying a nice meal with friends can make a difference. Most skin lymphomas should not affect your social life, apart from being restrained by appointments and treatment sessions.

Working and studying

Going to work or keeping up your studies can be a good thing, if you can manage it. It can help to take your mind off things and make you feel more like your usual self. Make sure to carefully balance the benefits of work against the additional physical and emotional demands it may have.

If you have early-stage, slow-growing skin lymphoma, it may not greatly affect your work or studies, apart from the disruption caused by GP and hospital appointments.

You might need some time off if you have treatment side effects. If you are having one of the more intensive treatments, or have to travel to another treatment centre, you may need to make bigger changes to your schedule. You might have to reduce your hours or take some time off work.

Be aware of the extra strain you are under. Avoid taking on more than you can manage. Be honest with employers and let them know what is happening, even if you don’t want colleagues to know. Tell your school, college or university what is happening to you and talk to them about what you should do. Staff are usually flexible and the schedule for coursework and examinations can often be adjusted. You can still achieve your goals if you have lymphoma.

Driving

Under normal circumstances, it is safe for you to drive during treatment. However, you may find that you feel too anxious, tired or unwell to drive yourself to and from hospital. If you take anti-sickness tablets with your treatments and feel drowsy, you shouldn’t drive. Consider having someone else take you to your first sessions until you see how you feel afterwards. Talk to your specialist about whether it is safe for you to drive if you are unsure.

Holidays

People often plan a holiday after a course of treatment has finished. It may also be possible for you to take a holiday during treatment. Discuss your plans with your hospital specialist. Ask for advice about when it is safe to travel and what precautions you should take and how to find the most suitable insurance.

If you are thinking of going abroad, to somewhere where you need vaccinations, talk to your specialist. Some vaccinations are not safe for people who have lymphoma, or who have recently had treatment.

Financial support

There are a number of benefits that you may be entitled to, depending on your circumstances. Benefits change from time to time so you need to get the most up-to-date information. Visit the benefits section of the GOV.UK website for more information.

Macmillan Cancer Support has a benefits advisory service. Benefits advisers are available at many Citizens Advice Bureau offices around the country.

There are other organisations that can make financial grants to people in difficult situations and some hospitals provide help with transport costs for people who are having regular treatment. Social workers who can advise you are often based at hospitals. You can also contact your local council’s Social Services Department. You can find their number online or in your local phone book.

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Further help and support

It can be difficult to cope if you don’t understand what lymphoma is and what it might do to your body. Having more understanding of your illness might help you to feel more in control.

Your specialist is the best person to ask about your illness. Feel free to ask questions. Some people find it helps to write questions down before an appointment and then note down what the specialist says. Sometimes people make a recording of meetings with their specialists. It may also help to take someone with you to appointments to help you remember what has been said.

Not everything you hear outside of your doctor’s office is reliable information or relevant to your condition. If you read something about skin lymphoma that you don’t understand, or if it makes you anxious, show it to your consultant or your clinical nurse specialist. They can explain the information and tell you whether it is relevant to you.

Talking about your feelings

You might be surprised how much better you feel after you tell someone what is happening to you. Talking to family and friends might be a good place to start, but those closest to you might find it difficult to talk about your illness. This doesn’t mean that they don’t care. They might find it hard to listen to you or not know what to say, particularly if they are dealing with their own feelings and anxieties. There are other sources of support:

  • your hospital may have a counselling service
  • your GP might be able to help or can refer you to a trained counsellor
  • the Lymphoma Association confidential Freephone helpline provides a listening ear for you, your family and friends.
  • Talking to other people with lymphoma or a chronic skin condition

Talking to other people with lymphoma can be a source of encouragement and support. Even if the person’s experience is not identical to yours, it can be a relief to speak to someone who has been through something similar. We might be able to put you in touch by telephone with someone in a similar situation through our confidential buddy scheme.

Skinship UK is a confidential general dermatology helpline set up and run by Ashley Medicks, who has been living with mycosis fungoides and lymphomatoid papulosis for over 40 years. He is happy to take calls from anyone with a skin lymphoma, their family or friends.

There are a number of support groups for people with lymphoma around the UK. Ask your clinical nurse specialist what is available locally or visit our website for a list of support groups. We also have online forums where you can post messages and communicate with other people affected by lymphoma.

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Supporting people with a skin lymphoma

When someone close to you has lymphoma, you have to cope with a great deal yourself. It can be difficult when you don’t know what to do. You may feel helpless someone go through a difficult and frightening experience. Be sure to take care of yourself. It might be tempting to dismiss your own needs and ignore your feelings, but this can’t help either of you.

Taking care of yourself

You will be better prepared to support your partner, family member or friend if you take time to take care of yourself:

  • Make sure you see a doctor if you are not well. It might be tempting to treat your own health problems as less important than what someone close to you is going through, but don’t neglect your own health.
  • Spend time with people other than the person who has lymphoma. It can help to go out and do the things you usually enjoy.
  • If you are a full-time carer, take time out each day to have a break – go for a walk, go to the shops, read a book, do something for yourself.
  • Try to get enough sleep and eat well.
  • Find out about skin lymphoma and its treatment to help you understand what is happening. If you are having trouble dealing with your feelings, talk to others close to you or seek professional help through your GP.

What you can do to help

It can be difficult to know what to say or do to help the person with lymphoma. The following suggestions may help:

  • Listen to what a person has to say without changing the subject.
  • It can be tempting to say something ‘positive’ when someone is frightened. It might be better to say something that can make them feel heard, for example, ‘That must be really hard’. Sometimes it’s best to say nothing at all and give them a hug.
  • Let the person with lymphoma know that you love them and care for them, in whatever way you can. Let them know that their appearance doesn’t affect how you feel about them. If you can’t be there in person, phone or send a card or email.

It can make a great difference if you help with practical things, such as:

  • offering to drive them to and from the hospital
  • accompanying them to their hospital appointments to help them remember what has been said
  • preparing meals or doing other practical tasks when they are tired or unwell
  • helping to care for other family members – children or ageing parents
  • organising things to do when they feel well enough.

Sometimes friends and family members offer to find information about lymphoma and its treatments. This might be very welcome, but take care to find out what kind of information the person feels they need and share what you have learned sensitively.

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Further reading

Related content

Skinship UK

Contact Skinship UK, the UK's leading general dermatology helpline.

Ashley with his wife Jackie

Ashley's story

Ashley runs Skinship UK and has been living with skin lymphoma for more than 40 years.