Questions to ask your medical team about lymphoma

A diagnosis of lymphoma can be difficult to cope with, especially if you are unsure how it might affect you. This information page gives a list of questions you might like to ask your medical team.

On this page

Finding out about your lymphoma

Questions about your lymphoma

Questions about tests and scans

Questions about staging

Questions about active monitoring (‘watch and wait’)

Questions about treatment

Questions about side effects of treatment

Questions about effects of treatment on other areas of your life

Questions about clinical trials

Questions about ending treatment

Questions about follow-up

Questions about relapse

 

Finding out about your lymphoma

The members of your medical team are best-placed to answer questions about your individual situation. Don’t hesitate to ask questions, or to ask for the information to be repeated if you don’t understand it. They are used to explaining things and will want to help you.

Below are some suggested questions you might want to ask your medical team. You may like to write down any questions to ask at your next appointment as they come to mind. Note down the information you are given during your consultation if this helps. Some people find it useful to take someone with them to help remember what they wanted to ask. You could make an audio recording, too – check with the hospital whether this is OK.

Remember that we are also here to support you, your family and friends.

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Questions to ask your doctor about your lymphoma

  • What type of lymphoma do you suspect I have?
  • Is my type of lymphoma quite common or is it rare?
  • Where in my body is the lymphoma?
  • How fast is the lymphoma growing?
  • Are my symptoms caused by the lymphoma?
  • Will they go away once treatment starts?
  • Is there anything you can give me to relieve the symptoms, or anything I can do to help lessen them?
  • What is the outlook for my lymphoma? Is it curable?

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Questions to ask about tests and scans

  • What tests do I need and why?
  • What do the tests involve?
  • Could the tests do me any harm?
  • Are the tests painful? Do I need an anaesthetic or sedation?
  • Where and when will I have the tests?
  • Can I drive myself home after the tests?
  • Do I need to take time off from work or school after the test or scan?
  • How long before I get the results?
  • How will I get the test results? Who will explain them to me? 

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Questions to ask about staging

  • What stage is my lymphoma?
  • 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?

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

  • Why are you recommending ‘watch and wait’?
  • Could my lymphoma get worse if I don’t have treatment straightaway?
  • Will my life be ‘on hold’ while I’m on ‘watch and wait’?
  • How often do I need follow-ups?
  • What happens during a follow-up appointment?
  • What symptoms should I look out for between check-ups?
  • Who should I contact if I am worried about symptoms?
  • If my lymphoma becomes active, do I need treatment straightaway? Which treatment?
  • How long do you expect me to be on ‘watch and wait’?

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Questions to ask about treatment

  • What treatment will I have? Why?
  • How does the treatment work?
  • How is the treatment given? Is it painful?
  • Where will I have treatment?
  • Will I need to stay in hospital overnight?
  • How long does each treatment session last? How long does the whole course take?
  • Can I drive myself home after my treatment?
  • When and how will you know if the treatment is working?
  • Does the treatment cause any side effects, straightaway or shortly afterwards? How long might these last?
  • Are there any potential late effects (side effects that happen months or year after treatment finishes)?
  • Will I be able to carry on my normal day-to-day routine during treatment?

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Questions to ask about side effects of treatment

  • What are the potential side effects of the treatment I’m having?
  • How long can they last?
  • Is there anything I can do to lessen or prevent the side effects?
  • Will the treatment affect my fertility? If so, how?
  • Are there any treatments to help with side effects?

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

  • Will I be able to carry on my day-to-day routine?
  • Should I be on a special diet while I am having treatment?
  • Are there any foods, supplements or medicines I should avoid while I’m having this treatment?
  • Is it safe to travel abroad during treatment?
  • Is it safe to out, for example if I am neutropenic?
  • Is it OK for me to diet?
  • Can I drink alcohol?
  • Can I have sex during treatment? Should I use contraception? If so, what type?
  • If my periods stop, could I still get pregnant?
  • What emotional support is available to me during my treatment?

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Questions to ask about clinical trials

  • Are there any clinical trials I should consider?
  • Do I have to pay to take part in a trial?
  • What happens if I change my mind about taking part once I have started the trial?
  • When will the results of the trial be available?
  • Will I be told the results of the trial? How and when?

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Questions to ask about ending treatment

  • How can I stay healthy during and after my treatment?
  • Is there anything I can do to reduce the risk of the lymphoma coming back?
  • How soon after treatment finishes can I have dental treatment?
  • Is it OK to have vaccinations? Should I have the winter flu jab?
  • Can I return to using my usual hair products when my hair grows back? When can I dye my hair again?
  • Can I travel?
  • If I want to start a family, how long should I wait after finishing treatment?
  • Do I need to declare my lymphoma diagnosis on a job application?
  • How can I cope with anxiety or other challenging feelings?

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Questions to ask about follow-up

  • What does follow-up involve?
  • How often will I be seen in the clinic after my treatment has finished?
  • What happens at the follow-up appointments?
  • Are there any symptoms I should look out for that might suggest the lymphoma has relapsed (come back)?
  • What should I do if I am worried about anything between appointments? Who do I contact?
  • How will I know if the lymphoma relapses?
  • Where can I go for help, support and advice between appointments?

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Questions to ask about relapse

  • Am I likely to relapse?
  • How will you know if the lymphoma relapses? Are there any symptoms I should look out for?
  • Is there anything I can do to reduce the risk of relapse?
  • How will I be treated if the lymphoma relapses?
  • What are the chances of going back into remission with further treatment?

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The questions on this page are taken from our booklet, Introduction to lymphoma, which you can download or order for free on our website.

Further reading

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