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After your diagnosis

After receiving a diagnosis of a brain tumour, which can be a great shock, your brain either can freeze or go in to overdrive. Here are some ideas of questions you may want to ask when you next see your medical team. It is a good idea to take someone with you, as different people hear different things from the same conversation. You may also tape any conversation as long as you tell the doctor you are doing so.

Questions on receiving a diagnosis

  • What grade is the tumour and what do the grades mean?
  • Is the tumour cancerous? If not, what does benign actually mean?
  • Who will look at my test results?
  • What does the pathology/histology tell you about my tumour?
  • Who will be leading my overall treatment?
  • Can I get a second opinion if I want one, and how do I do that? See also Treatments for information on this
  • Do you have any reading material I can take home with me to digest later?
  • Do I have a choice in who will do the surgery, if recommended?
  • What does 'multi-disciplinary team' mean? Who will be on this team and what do each of them do?
  • Is there a local support group for brain tumours? See also our closed Facebook Support Group page

Questions on what happens next

  • What experience do you have in this field? Who will do my surgery?
  • How many surgeries have you done yourself? Will I be awake or asleep for the surgery?
  • What treatment plan do you suggest?
  • What is the aim of each treatment?
  • Would any of these treatment options keep me from participating in a clinical trial in the future?
  • Are there any clinical trials in which I can take part?
  • When should I start treatment?
  • What are the possible side effects of each treatment?
  • How will I deal with these side effects?
  • Will I be able to work, exercise, and perform my usual activities?
  • Could this treatment affect my fertility and sex life? If so, how and for how long?
  • Will I be able to talk with a fertility specialist before treatment begins?

Questions to ask re the surgery

  • What type of surgery will I have?
  • How long will I be in surgery?
  • How long will I stay in hospital?
  • How will I be after surgery?
  • What are the possible short term/long term effects of surgery?
  • How will I be supported when discharged from the hospital?
  • Will I be able to ring anyone if I am worried?

Questions to ask re radiotherapy

  • What is the goal of this treatment?
  • How long are the sessions, and how long will it go on for?
  • What are the possible side effects of radiotherapy treatment?
  • Are these likely to be short or long term?
  • What can be done to relieve any side effects?

Questions to ask regarding follow up care

  • What is the chance that the tumour will come back?
  • What signs should I look out for?
  • Who do I contact if I have symptoms?
  • After treatment, what follow up checks will I need, and how often?
  • Can I have copies of any scans/written reports?
  • Who will I see during follow up care?
  • What other support services are there for me or my family to access?