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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?

Your Brain Tumour Team

A checklist to help you in these first few days and weeks after diagnosis:

Your GP: You will need to have a professional central to your situation who can monitor your progress and refer you to the different professionals who will help you on your journey. These may be one or two, or all, of the following:

A Neurosurgeon will be referred by your GP or your hospital if you are to have surgery.

A Neurologist: You may find you have seizures/convulsions*, or headaches. A neurologist will help you with both. You may also need help with anxiety, insomnia, swelling, or anaemia.  There are many kinds of seizures [epilepsy] and multiple medications to treat them. It may take time and experimentation to find a medication ideally suited to you and your type of seizures & condition.

Do note down any medication you are prescribed [purpose, dosage, & dates prescribed]. It is also advisable, if you have seizures, to wear a medical alert bracelet or necklet so that helpers/professionals can immediately know what is happening.

Taking notes during appointments can be a help. You can take someone else with you to make notes and even consider using a tape-recorder, as long as the professionals know you are recording them.  You may be weary and you may be confused by all the new information coming your way. This will help.

An Oncologist may be needed to describe for you the nature of your tumour, and to advise you on the best treatment plan going forward.

A Pathologist will have played a role in determining the nature and type of your tumour.

A Radiation/Radiotherapy Oncologist will be referred, possibly by your oncologist in the event that you are recommended to have radiation therapy.

A Brain Tumour Care Coordinator: If you are fortunate you may meet a specialist, or be at a hospital, where there is a specialist nurse in the ‘neuro team’ to help you along the tumour path. Do ask about this as it is not always mentioned.

Make sure you have contact details for all the above and know to whom you can refer questions so you can be sure your questions will be heard and answered.

Complementary Specialists/Allied Health Professionals: these can all help you with optimising your ongoing mental and physical health after a brain tumour diagnosis:

A Psychotherapist/ Psychologist: You will be taking in a lot of new information and your life has turned a big corner. You may want to chat to a professional to help ease you through the hard times.

It is vital that you do not face everything alone. Call on family and friends for help if you need it…they will be keen to help but will not know how.  They can perhaps help with preparing meals, school runs, shopping, laundry etc

A Social Worker may also be available if you stay in hospital; or your GP may help you find one.

An Exercise Physiologist, Physiotherapist, Occupational Or Speech Therapist:
To help you plan to be the strongest and fittest you can be as you may need help getting back on your feet after surgery.