Questions to ask your medical team about lymphoma

On this page, we've listed some of the questions you might like to ask your medical team if you've been diagnosed with lymphoma. Some topics might not be relevant to you, or only become relevant at certain points.

Go at your own pace and ask as many or as few questions as you want to. If the answer isn’t clear, don’t be afraid to ask again, or ask them to write it down for you. Health professionals are used to explaining things and will want to help you.

On this page

Finding out about your lymphoma

Questions about your lymphoma

Questions about tests and scans

Questions about staging (how advanced your lymphoma is)

Questions about active monitoring (‘watch and wait’)

Questions about treatment

Questions about side effects of treatment

Questions about effects of lymphoma and treatment on other areas of your life

Questions about clinical trials

Questions about finishing treatment

Questions about follow-up

Questions about relapse

Finding out about your lymphoma

How much you choose to find out about your lymphoma is a very personal decision. You might want to know as much as you can, or you might prefer to have just high-level information. The amount you want to know could change over time too. Go at your own pace; you don’t have to ask all of your questions at once if you’d prefer to find out more detail later.

Below are some tips that you might find helpful:

  • Write down any questions as they come to your mind. Take these with you to your next appointment.
  • Note down the information you get during your appointments. You could ask the hospital whether it’s OK to make an audio recording of the consultation.
  • Consider taking someone with you to appointments, both for emotional support and to help remember key points.

The health professionals in your medical team are best-placed to give you information specific to your individual situation. Remember that we are also here to support you, your family and friends.

 
If someone knows more about what is happening, this can help them to feel more in control, and empower them to consider what might be helpful for them in managing their situation.
Sharon, Lymphoma Action helpline services team

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Questions to ask about your lymphoma

  • What type of lymphoma do I have?
  • Where in my body is the lymphoma?
  • Is the lymphoma fast-growing or slow-growing?
  • What is my outlook?

Talk to your doctors about any symptoms you are experiencing. Let them know how they are affecting you, physically and emotionally. Find out from them what you can do to help lessen them, or if there is any treatment they can offer to help ease them.

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Questions to ask about tests and scans

  • What tests do you recommend I need and why?
  • What do the tests involve?
  • Could the tests cause me any harm?
  • Are the tests painful? Will I be given anaesthetic or offered sedation?
  • Where and when will I have the tests?
  • Can I drive myself home after the tests?
  • Do I need to take time out of work or education after the tests?
  • How long will I be waiting for test results?
  • How will I get the test results? Who will explain them to me? 

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Questions to ask about staging (how advanced your lymphoma is)

  • What stage is my lymphoma? What does this mean?
  • Is it at an early or an advanced stage?
  • How does the stage affect my treatment?
  • What is the outlook for my type of lymphoma at this stage?

Note that the staging system is not used in all types of lymphoma. 

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Questions to ask about active monitoring (‘watch and wait’)

  • Why are you recommending active monitoring (‘watch and wait’)? What reassurance can you give me that this is a suitable approach for me?
  • Are there any other options that might be suitable?
  • Might my lymphoma get worse if I don’t have treatment straightaway?
  • How often will I have follow-up appointments to check on my lymphoma? What happens during these appointments?
  • What symptoms should I look out for between follow-up appointments? What should I do if I notice these?
  • What can I do to help myself stay as well as possible while I am on active monitoring?
  • How long do you expect me to be on active monitoring? What active treatment might I be offered afterwards?

We have more information about ‘watch and wait’, including a short video explaining the approach, and a set of videos of people’s personal experiences of being on ‘watch and wait’. We also produce a book: Active monitoring (‘watch and wait’) for lymphoma, which you can download or order free of charge.

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Questions to ask about treatment

  • What treatment are you recommending for me and why?
  • How does the treatment work?
  • How is the treatment given? Is it painful?
  • Where will I have treatment?
  • How long does each treatment session last? How often will I have treatment?
  • How long does the whole course last?
  • Will I need to stay in hospital overnight?
  • Can I drive myself home after my treatment?
  • What is the aim of the treatment? How and when will we know if it is working?
  • How successful is treatment likely to be?
  • When and how will you know if the treatment is working?

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Questions to ask about side effects of treatment

  • What side effects am I likely to get from this treatment? Are these likely to happen soon after treatment?
  • How long can side effects last?
  • Is there anything I can do to lessen or prevent the side effects?
  • Are there any treatments to help with side effects?
  • Will the treatment affect my fertility? If so, how? 
  • Are there any potential late effects of the treatment (which happen months or years after having treatment)? If so, is there anything related to these that I should take into consideration in the future?

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Questions to ask about effects of lymphoma and treatment on other areas of your life

  • Can I carry on with my usual day-to-day routine during treatment?
  • Am I likely to need time out of work or education during or after treatment?
  • Can I continue to exercise during treatment?
  • Is it safe to travel to another country while I'm having treatment? Can I go on holiday within the UK?
  • Are there any foods, supplements or medicines I should avoid while I’m having treatment?
  • Is it safe for me to eat out at a pub, restaurant or café while I’m having treatment?
  • Is it OK for me to diet?
  • Can I drink alcohol?
  • Can I have sex during treatment? Should I use contraception?
  • What emotional support is available to me?

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Questions to ask about clinical trials

  • What is a clinical trial?
  • Are there any clinical trials available to me?
  • What are the potential advantages and disadvantages of taking part in a clinical trial?
  • What happens if I start a trial but then no longer want to continue with it?
  • When will the results of the trial be available?
  • Will I be told the results of the trial? If so, how and when?

We have more questions to ask about clinical trials that you might be interested in if you are considering taking part in one.

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Questions to ask about finishing treatment

  • What can I do to stay healthy during and after my treatment?
  • Is there anything I can do to reduce the risk of the lymphoma coming back (relapse)?
  • Are there any health issues I should look out for after my treatment ends?
  • How soon after treatment finishes can I have dental treatment?
  • Is it OK to have vaccinations? Should I have the winter flu jab?
  • If I have experienced treatment-related hair loss, when can I start using my usual hair products again? When can I dye or perm my hair?
  • Is it safe for me to travel to another country?
  • If I want to start a family, how long should I wait after finishing treatment?
  • Do I need to state my lymphoma diagnosis on an application for a job or volunteering role?
  • How can I cope with anxiety or other challenging feelings?

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Questions to ask about follow-up

  • What is the purpose of follow-up?
  • What happens at the follow-up appointments?
  • How often will I have follow-up appointment after I finish treatment?
  • Are there any symptoms I should look out for that might suggest the lymphoma has come back (relapsed)?
  • Who should I contact if I am worried about anything between appointments?
  • What emotional support  is available to me between appointments?

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Questions to ask about relapse

  • Is my lymphoma likely to relapse (come back)?
  • Is there anything I can do to reduce the risk of relapse?
  • How will I know if the lymphoma relapses?
  • Are there any symptoms I should look out for?
  • What treatment might I be offered if the lymphoma relapses?
  • What is the likelihood of the lymphoma going into remission with further treatment?

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You can find out more about lymphoma on our website, in our books and other resources.

 

Further reading