Practicalities if you are a young person with lymphoma
This information aims to help with some of the practicalities of living with lymphoma if you are a teenager or young adult aged up to 24 years old.
We have separate information about lymphoma in young people, which explains what lymphoma is and how it might be treated. You might also be interested in our Young person’s guide to lymphoma book.
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I've been diagnosed with lymphoma – what happens next?
What treatment will I be offered?
Where will I have lymphoma treatment?
I've been diagnosed with lymphoma - what happens next?
When you first find out you have lymphoma, you might feel a mixture of feelings, including shock, fear, numbness and disbelief. Some people are relieved to get a diagnosis after having investigations into what might be wrong.
From the point of diagnosis onwards, you should be offered support to identify and address any practical, financial, physical, emotional and social needs you might have. This is known as a holistic needs assessment (HNA) and involves conversations with your health professionals. Often, it is carried out as a questionnaire. You can ask a member of your medical team for information about this. You might also be interested in information from Macmillan Cancer Support about holistic needs assessments.
Once a lymphoma diagnosis is confirmed, you might have further tests and scans. These help your doctors find out as much as possible about the lymphoma and how it is affecting you. They use the information to plan the best treatment for you.
It can be challenging to wait for test results. Different people find different ways of coping.
Alongside your medical team, our Helpline Team is here to support, however you are feeling.
What treatment will I be offered?
A multidisciplinary medical team (MDT) of health and social care professionals work together to plan and provide the best possible treatment for you.
They should talk to you and give you written information about the type of lymphoma you have. They should offer opportunities you to for to talk to them about:
- your diagnosis
- treatment options
- possible side effects of treatment, including in relation to your fertility
- possible late effects of treatment (health problems that can happen months or years after your original treatment).
Before you can have any treatment, you’ll need to agree (consent) to treatment.
There can be a lot to take in and understand, which can be particularly difficult in times of heightened stress and anxiety. There might be times that you’d like information repeated or to be explained in a different way. Health professionals are used to this so don’t hesitate to ask. Remember that our Helpline Team is also here to support you.
Don’t hesitate to ask questions. Healthcare professionals are always happy to provide answers and support, to help ensure that you feel confident and comfortable with your treatment plan. Understanding your diagnosis and treatment is important because it allows you to make informed decisions about your health and care.
Your keyworker
You should have a key worker. This is a member of your MDT who will be your main point of contact for any questions or concerns you have. Usually, this is a lymphoma or haematology clinical nurse specialist.
Remember that it’s OK to ask as many or as few questions as you want to. We have a list of suggested questions to ask about lymphoma that you might find helpful.
Agreeing (consenting) to treatment
Before you have treatment, the hospital needs written consent to treatment.
- If you are under the age of 16, a parent or guardian must provide consent to treatment.
- If you are aged 16 or over, you are generally considered to be able to make your own decisions about treatment, although there are some exceptions to this.
Make sure that you understand what treatment involves and about any possible side effects and late effects of treatment. You might want to ask about any possible long-term implications, such as about any effects on your fertility.
Being involved in treatment decisions
No matter your age, finding out about lymphoma and sharing your thoughts on treatment and care can help you feel more involved and empowered. This can give you a greater sense of control and support your ability to cope, both now and in the future.
It’s also important to think about activities you enjoy for fun or relaxation between treatments, as maintaining your usual routines can make a big difference. Just be sure to check with your medical team to ensure the activities are safe for you and to find out about any necessary precautions.
Where will I have lymphoma treatment?
As a young person with cancer, you might be treated in:
- A Principal Treatment Centre (PTC), which is a hospital with specialist facilities for diagnosing and treating children and young people (aged 13 to 18) with cancer.
- A teenage and young adult (TYA) designated hospital, approved to treat teenagers and young adults (aged 19 to 24) with lymphoma as part of its adult cancer services. If you are treated in a TYA designated hospital, your care is overseen by specialists at a PTC.
- A teenage and young adult (TYA) unit, which is sometimes part of an adult hospital. These units are designed specifically for TYA and allow you to spend time with and get support from other young people.
If you're between 19 and 24, you and your medical team might be able to decide together where to have your treatment. You might want to think about:
- the general environment and facilities of each option
- how much time you are likely to spend in hospital
- whether you’d like friends and family to visit often and, if so, how easy this would be for them.
I was diagnosed with Hodgkin lymphoma 13 years ago, aged 15. I had around six months of chemotherapy and steroids based at Birmingham Children’s Hospital and have been in remission since.
What is ‘joint care’ or ‘shared care’?
You might have some of your treatment in two different hospitals with:
- Some appointments at one hospital (the Primary Treatment Centre or PTC) for scans, specialised care such as chemotherapy, and follow-up appointments after treatment. The PTC might be a bit further from your home.
- Other appointments at a Paediatric Oncology Shared Care Unit (POSCU). This is for supportive care, such as managing treatment side effects and helping you with any physical and emotional wellbeing needs you might have. This hospital is usually more local to you.
Having some appointments at the PTC and some at a local hospital is known as ‘joint’ or ‘shared care’.
As I had just turned 19, I was asked if I would prefer to be treated in my local hospital or for my care to be transferred to a Principal Treatment Centre (PTC) where they have specialist facilities for treating young people. I chose the PTC and I have to say, my medical team were absolutely brilliant.
You can read more about cancer services for teenagers and young adults on the NHS website.
When will I need to go to hospital?
When and for how long you go into hospital depends on factors such as:
- The type of lymphoma you have.
- Your treatment schedule, including the type and dose.
- Times when your medical team needs to keep closer checks on you – for example if you develop an infection that needs treatment, or need monitoring for side effects of treatment.
Your medical team should give you information about how much time you are likely to spend in hospital. You can also talk to them about any time you might need off from studies and education.
Treatment as an outpatient
If your treatment is likely to be given to you as an outpatient, this means that you can go home overnight.
If you need to go to hospital frequently and making these journeys is difficult, speak to your key worker (often you clinical nurse specialist) or hospital social worker. It might be possible for them to help with travel arrangements, including telling you where you might be able to get help towards the costs.
Read more about help with travel and travel costs in our information about day-to-day living.
Treatment as an inpatient
There might be times when you need to stay in hospital overnight. This might be for treatment or for monitoring of side effects, such as serious or persistent infections.
If you need to stay in hospital overnight, a family member might be able to stay with you.
It’s often possible to visit a hospital before treatment starts so that you can familiarise yourself with the environment and ask any questions. For example, you might like to find out about:
- facilities such as WiFi, a TV, a common room and a kitchen
- social and emotional support, for example through social activities, social workers, youth support workers, counsellors or psychologists
- visitor policies, such as when visiting hours are and what visitors can and shouldn’t bring.
My tips for hospital stays would be: have a phone charger, headphones or airpods, fluffy socks, blanket or comforter and snacks. Think about what you can take so that you can be comfortable if it’s a long chemo day or you might have to stay overnight.
You might find it helpful to write down any questions you have before your visit. You could talk these through with someone, such as a parent or carer, or a close friend.
You might also be interested in information about Young Lives vs Cancer’s home from home scheme. This offers a free place for families to stay, close to their child’s Principal Treatment Centre (PTC) during treatment.
Social workers
A social worker can support young people who have cancer and their families. They can help you to understand your lymphoma and its impact on your life.
They can also support you with a range practical, social and emotional aspects. For example, they could help to:
- Arrange travel (possibly also for your siblings) to and from the hospital. This might include organising help towards travel costs.
- Communicate with your school.
- Apply for financial support that you might be eligible to receive.
- Put you in contact with other young people who have experience of a cancer diagnosis.
- Listen to you if you want to talk about how you’re feeling.
If you are interested in the support of a social worker, ask a member of your medical team for information. Some hospitals have social workers provided through the charity Young Lives vs Cancer.
How can I look after myself?
Taking good care of yourself during and after treatment can help in lots of ways, such as:
- helping you to get ready for treatment (prehabilitation)
- reducing the risk (and sometimes severity) of treatment side effects
- helping your physical and emotional recovery after lymphoma treatment
- lowering the risk of developing some other illnesses, such as other cancers and heart disease in the future.
Healthy lifestyle factors include good diet and nutrition, exercise and physical activity, relaxation and getting enough restful sleep and managing stress. There are also steps you can take to help reduce your risk of infection.
I’ve worked hard to regain my fitness and I work out weekly with my personal trainer. I’m disciplined with my diet and I’ve developed a love of cooking.
It is also recommended that you do not smoke or use e-cigarettes (vape) or use recreational drugs. Find out more about everyday life and healthy living.
Talk to your medical team for advice on coping with any symptoms of lymphoma or side effects of treatment. It’s also important to tell them about any side effects of lymphoma treatment you experience. They can help you to manage them and adjust your treatment plan if necessary.
There is also information below about medical matters after treatment, to help you stay well.
How can I Iower my risk of infection?
Lymphoma and its treatments can increase your risk of infections. This is the case both during, and for several months after treatment finishes. Infections are more likely if you have neutropenia (low neutrophils – a type of white blood cell that helps to fight infections).
Although you can’t get rid of the risk of infection entirely, you can help yourself by:
- Being aware of the signs and symptoms of infection so that you can contact your medical team straightaway if you develop any. Some infections need treatment with antibiotics and a delay in getting this treatment can be serious.
- Take steps to help minimise infections. Keep good personal hygiene, minimise your contact with germs and protect your skin.
- If you are given a medical warning card, carry it with you at all time.
Studies and education
You’re likely to need some time off from studies, especially during treatment. Talk to staff at your school, college or university to find out how they can support you. It might help to tell them about your:
- lymphoma and treatment plan, including any side effects of treatment
- risk of infection, asking them to let you know as soon as possible about any illnesses among the student community, particularly chickenpox, measles and shingles – your risk of infection can be higher even if you’ve had these in the past or have been vaccinated to protect against them.
Your keyworker, consultant or GP can write a letter to explain your situation. Your keyworker or social worker can also support you in communicating between your hospital and your place of education.
Have a think about asking your school to inform your year group about your lymphoma diagnosis. It might help by preventing false rumours from spreading, ensuring that your classmates get the correct information right away. This allows you to control what you want shared and when. It also helps prevent bullying or teasing, as students are more likely to be supportive and understanding when they have accurate information. By being open, it fosters a sense of empathy and support from your peers, creating a better, more positive environment for you at school.
There’s more about studies and education in our information about day-to-day living.
Work
Most people take some time out of work during lymphoma treatment. This could be for a short while. However, you might need to make some changes in the months afterwards.
If you are employed, speak to your line-manager or Human Resources (HR) department to find out how they can support you. Your consultant or GP can write a letter to explain your situation. Your keyworker or social worker can also support you in communicating between your hospital and your employer.
It was a good six months after I finished treatment until I went back to work on a phased return. It was difficult getting back into working life. The fatigue as a result of the treatment was hard, and even now I experience some long term effects like brain fog, which affects my memory from time to time.
There’s more information about working, whether you are self-employed or employed, on our day-to-day living webpage.
Relationships, family and friends
Adjusting to a life with lymphoma can put pressure on your relationships with family and friends. Some of the relationships that can be most impacted are those with parents or carers, brothers and sisters, and partners.
Honesty about your feelings and finding ways of communicating effectively can be very helpful – both to your relationships and emotional wellbeing.
Your parents or carers
One of the relationships that lymphoma can have a particular impact on is the relationship between you and your parent or carer, even if you are now an adult yourself. For example, you might think they seem overprotective and controlling. They might not want you to go out with friends or to go to certain places like cinemas, clubs, busy shops or use public transport if your white blood cell count is low (neutropenia) and you are at greater risk of infection.
Talk to your parents if you feel uncomfortable with their approach. It might help to come to some agreements together, for example:
- I’ll ask for help if I’m tired if you can let me do some things for myself.
- I agree to stay home if I feel unwell but you agree to me going out with my friends if I’m well enough.
- I’ll call you for help with getting home if I start to feel unwell when I’m out.
Brothers and sisters
You might find that your relationship with siblings feels different to before you had lymphoma. For example, they might seem overprotective. They might be envious of the attention you’re getting. Perhaps you feel frustrated or jealous of them being able to carry on with their lives and usual activities while you are unable to do all that you did before your lymphoma diagnosis. It might feel that there’s a general strain to your conversations.
Try explaining how you feel. Listen to how they feel too. You might be surprised at how supportive they are and find that you get a better understanding of one another.
Partners
If you are in a relationship, this is likely to be a tough time for both of you. Your partner may feel helpless and not know what to say or do. Talk to them about how you feel. Try to be honest and think about what they could do to help you. Think about things you can do together ‘away from your lymphoma’ too.
Friends and acquaintances
Think about what information you’re comfortable with sharing with friends and acquaintances. It’s up to you how much or how little you tell others about your health.
You could then find a way to send updates without having to repeat conversations. For example, you could have a key contact who lets groups of friends know the news you would like them to, or you could send a group email. Social media can be a great way of updating lots of people all at once, though keep in mind that anything you post could remain online in the future.
For a while I felt like I lost the ability to speak with people socially who were outside of my family or the hospital team, but I am slowly getting that back. I remember walking with a friend and it felt weird – what could I say? I like talking to people and I am quite open, but I found it difficult to adapt back to the normality of speaking to people everyday. It was certainly something I didn’t expect.
You can read more from Matt in the personal stories section of our website.
Read more about the impact of lymphoma on relationships in our section of our website about relationships, family and friends.
After treatment
It can take time to adjust to life after treatment. Many people describe it as ‘finding a new normal’. Although it can bring relief and a sense of celebration, some people find finishing treatment challenging and feel uncomfortable with having less interaction with their medical team.
When I was told I was in remission it was the biggest relief and almost felt too good to be true. I am grateful but I do worry whether it will come back.
At the moment I feel very angry with the universe. I feel like I have been pulled away from what I loved.
Everything is different and I am having to come to terms with settling for the life I have now rather than the life I wanted. In the meantime, I have been delivering talks on the symptoms of cancer in young people, which I have found really rewarding.
Try to show yourself kindness and patience, however you feel. You might also want to contact our Helpline Team and find out how we can support you. If you are aged 18 or over, you might also be interested in our Live your Life programme, a peer-led self-management course designed for people who have just finished treatment or are on active monitoring (watch and wait).
Your medical team should support you in your recovery after lymphoma treatment, including about adjusting to life after treatment.
After I had my last treatment, my friends and family turned up as a surprise. They also organised a surprise party for me shortly after which was really nice. Whilst it was a great feeling to know the treatment had finished, people tend to think you go back to normality but actually that’s not the case. Ending treatment isn’t a case of ‘now you are done.’ My mind turned to wondering ‘what’s next’ and the worry that it will come back. I try to stay positive and I’m now so much more aware of the things that are happening in my body. I go to the doctors and get checked if I need to.
Treatment summary
As part of your care after treatment, your medical team should offer you personalised care and support suited to your individual needs. This includes giving you a written treatment summary, outlining your lymphoma diagnosis and treatment, its possible side effects and late effects.
Your treatment summary should also tell you what symptoms to look out for and who to contact if you notice them, including an out-of-hours number to call if you need to. The summary should outline your follow-up plan and any lifestyle recommendations, for example about diet and exercise.
Medical matters after treatment
Your medical team will give you information about health and safety precautions to take after treatment, both now and in the future. We outline some of these below. You can also read more about medical matters after treatment in our Young person’s guide to lymphoma.
It’s important that any health professionals treating you know that you have had lymphoma and what treatment you’ve had. This will be outlined on your treatment summary.
You might also need to carry a card with information if you:
- have had your spleen removed (splenectomy)
- have had treatment with radiotherapy
- need irradiated blood if you ever need a blood transfusion.
The purpose of these cards is so that anyone providing medical care to you in the future (including doctors, dentists and anaesthetists) can take any necessary precautions. This might include monitoring you more closely and, if appropriate, offering you a different treatment.
General health and safety precautions
There are some general health and safety precautions you can take to help you stay well after lymphoma:
- Limit damage to your skin from the sun. Treatments such as chemotherapy and radiotherapy can have a lasting impact on your skin’s sensitivity to sunlight. Exposure to UV radiation from the sun can also increase your risk of developing other cancers. Take care to avoid damage from the sun by covering your skin and using a high factor sun screen (SPF 50), particularly when UV rays are strong. Cancer Research UK has more information about sun, UV and cancer. The NHS website also has advice about sun safety.
- Keep up-to-date with any vaccinations you need. Ask your consultant for advice about vaccinations, including whether to have the annual winter flu jab and the pneumococcal pneumonia vaccination. They can also tell you if you need to have some vaccines you had in childhood repeated. You might be advised to wait 6 months to a year after you finish your treatment to have some live vaccines.
- Get advice from your medical team before you travel to another country.
- Some treatments for lymphoma can affect your heart. You will have an echocardiogram (‘echo’) scan as part of your follow-up after lymphoma treatment to determine this.
Talk to your medical team about staying up-to-date with vaccinations – this extends to the people you live with. As my younger sister hadn’t had chickenpox, we were recommended that she have the vaccination as there was a risk she could bring it home from her primary school and make me unwell.
Further support
As well as your medical team, our Helpline Team are here to support you to live well, with and beyond lymphoma.
You might also be interested in our:
- personal experience stories from children and young people diagnosed with lymphoma
- Young person’s guide to lymphoma book
- peer-led Live your Life self-management programme, if you are aged 18 or over.
There are also lots of other organisations that offer support and information dedicated to children and young people with cancer.