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Questions Guide for newly diagnosed brain tumours
Questions to ask your consultant or medical team, and things to think about
A list for you to pick and choose from according to your needs
1. What type of tumour have you found? What specific operation or procedure are you recommending for my brain tumour – and WHY?
Are there different ways of treating this condition? Why do you advise this particular treatment instead of another? What are the advantages and benefits for me?
a. What will my follow-up care be? (re-checks, medication, follow-up scans?)
b. If I don’t do anything about this problem, what’s likely to happen? When?
c. If I have this treatment, what is the recurrence rate (chance of it coming back in the future)?
d. What treatment options are available if my tumour is not suitable for neurosurgery and is too large for radiotherapy?
2. Why do you think I need this operation or procedure? How soon? To relieve pain? To reduce my symptoms? To make me function better? (One doctor may say you need surgery immediately, another one may give you a different opinion. NB: See Q 9 below.)
3. What are the risks/side-effects associated with my condition and/or this treatment?
a. How common are they?
b. What is the current location, rate of growth and size of my tumour?
c. What problems might I get from the tumour?
d. What problems might I get from the treatment?
4. Should I continue to take all my regular medications, (including hormone replacement therapy? Birth control?) What if I am/or get/ pregnant?
5. What effect will this surgery/procedure have on any other medical problems and medications? And how will it affect my family?
6. When will I be able to return to work, full-time, part-time, and handle everyday activities again? What about disability help and/or rehabilitation if needed?
7. What will my follow-up treatment be? How often do I have to come back? How often and for how long will I have follow-up MRI’s (semi-annual or annual, for how many years)
9. What other treatments might I have to consider in the future? Are there any medical chemotherapy treatments available that eould help me e.g. would I benefit from concomitant therapy? (this is a course of radiotherapy with a
chemotherapy drug given alongside eg radiotherapy + PCV or Temozolomide). You will usually speak to a Neuro-oncologist about this.
8. Seeking a second opinion: If you are unsure about what to do, you may wish to ask for a SECOND opinion. NB: You must ask for this specifically! Your consultant can arrange it and will be quite familiar with such requests. It is common practice and perfectly acceptable for a patient with a serious condition to seek a second opinion from a consultant at another hospital. A second opinion can help put your mind at rest.
Questions for a neurosurgeon:
9. Is “Watching and Waiting’ an alternative to surgery for my condition? What are the risks for me if I choose to Watch and Wait for a while?
10. How long will the surgery or procedure take? What about my family – can they come/stay in hospital? Is there any accommodation available?
11. Hormone Receptor Tests: Tumours are thought to be influenced by hormones - Will hormone receptor tests be included in the pathology report?
12. Hospital Stay. How long do you think I will be hospitalised? In an Intensive Care Unit (ICU) or High Dependency Unit (HDU)?
13. Additional costs or medication. What other medical costs or medications will there be after the surgery or this procedure? Will I need more radiation or surgery? What for?
14. How long will I have to stay in the hospital?
a. How much medical care might be needed when I return home?
b. Can my family care for me? Can I get extra help? When can I drive again?
15. How long will I need medicine afterwards? MRI scans? How often will I be followed up? How many medicines, and for how long? What are their side effects?
16. What is your follow-up plan if there is some tumour remaining, or if there is a recurrence?
Additional questions for radiotherapy/radiosurgery:
17. What kind of equipment do you use? Can you explain what kind and how much radiation I will get? (There are several different types of Stereotactic Radiotherapy (Fractionated) and many brand names of brain radiation machines like Linac (Linear Accelerator), Gamma knife etc.).
18. Radiation Effects. What are the short-term and the long-term effects of radiation?
19. What will my follow-up treatment be? Drugs, re-checks, MRI scans?
20. Why might I need more treatment in the future?
Many patients like to tape their consultation on a small cassette recorder or take a friend to make notes so they have a record to consult later. It can be difficult to take in all the detail at first hearing.
Note: It’s a good idea to remind your friend or family member it is YOUR consultation, not theirs!
Brain Tumour UK Website: braintumouruk.org.uk