Questions To Ask Your Medical Team About Brain Tumors
1. What specific operation or procedure are you recommending for my brain tumor? If it were your son or daughter, what would you do? How do I get a second opinion? (Note: Be sure to get another independent second opinion if your brain tumor treatment is not an emergency. Many HMO insurance companies and Medicare pay for a second opinion, but you must often ask about this specifically.)
2. Do you have any free reading materials about my brain tumor and treatment options? Do you have photos, illustrations or any written information about the procedure that you are suggesting? Where can I get additional reading material about this diagnosis?
3. What kind of equipment do you use? Do you have MRI guided treatment? How old is your equipment? Can you explain what kind and how much radiation I will get (if radiation is
involved in the treatment plan)? What further options are available at other medical centers?
4. Can I have free copies of my printed MRI reports? A free copy of my own set of MRI films? Can I send my MRI films and medical records to other major medical centers that have free evaluations and consulting services? (Note: If you ask for personal MRI film copies BEFORE the scan imaging appointment, it may be easier to get them for free or at a reasonable cost.) Many patients keep their own set of MRI or CT scan copies.
5. Are there several different ways of treating this brain tumor or doing this procedure? Why do you think I need this operation or procedure? What might happen if I refuse treatment?
6. What are the risks, side effects, and complications associated with my condition or this procedure and/or medications? What complications can develop afterwards? How common are these risks, side effects, and complications? How are they treated?
7. What is the current location and size of my tumor? What functions and parts of my brain or spinal cord might this tumor or this treatment affect? In what ways? What are the advantages and benefits of this particular surgery or procedure? What is the next most frequently used treatment? What are its advantages and disadvantages?
8. What will my follow up care be? Will this include annual MRI scans for the rest of my life?
9. How long do you anticipate the surgery or this procedure will take? Is this surgery or procedure considered experimental in any way? How many times is it performed in the US each year?
10. How many patients with this specific type of condition do YOU treat each week? Monthly? Annually? Can I meet or talk to some of them?
11. What are YOUR results with this condition and this type of surgery or treatment? How many treatment options are available at this facility? (Note: Choose a neurosurgeon, radiologist, neuro-oncologist or oncologist who has plenty of experience with brain tumors. Find out how familiar he or she and their team are with newer treatments.)
12. What kind of anesthesia and pain killers will be used? Are there choices? If so, what are they? How long will I need medication? What about anti-seizure medications? Do I need
them? For how long? Where can I get more information about the medications that I might
need to take as part of my treatment?
13. Are there any medical chemotherapy treatments for this type of brain tumor? Clinical Trials?
(Go to Virtual Trials for more information about clinical trials.)
14. Should I continue to take all my regular medications, including thyroid medicines, hormone replacement therapy? Birth control? What if I am pregnant? Or get pregnant? (Note: certain brain tumors like meningiomas are sometimes hormone related. Some medical researchers believe they may be stimulated by pregnancy, progesterone, estrogen and/or perhaps pre-menopause or menopause.) Can my tumor samples be tested for hormone receptors?
15. Is one alternative to immediate surgery or radiation treatment "watchful waiting"? What are the risks for me if I choose to watch and wait for a while or several years? What if I just
want it done right away to avoid an agonizing wait?
16. What is your follow-up plan if this surgery or treatment does not work? How many of your patients end up having both surgery and radiation? In which order do you think is best to proceed? How important is this to know ahead of time? Can I get a second opinion on the tumor tissue samples in my pathology report from another national expert pathologist?
17. How much of the cost of this treatment will my insurance/Medicare cover? How much will I have to pay out of pocket? (Note: You may also have to call your insurance company or
HMO for this information, especially if you want to go out-of-network and/or out of town.)
18. What effect will this surgery and/or radiation procedure have on my other medical problems and medications? How long do you think I will be hospitalized? Will I be in ICU? What if I need rehabilitation care? Are those services provided at the same facility?
19. What other medical costs or medications will there be after the surgery or this radiation
procedure? Will I need cognitive therapy? Occupational, speech or physical therapy?
Neuropsychological testing? Should this testing be done before and/or after treatment? If I
need physical, speech or occupational therapy, can these therapies be available as an
outpatient?
20. When will I be discharged from the hospital or rehabilitation center? What kind of medical care might be needed when I return home? Can my family care for me? Can I get extra help? If so, what kind of home care might be needed and how much will it cost?
21. When will I be able to return to work (full-time, part time) and handle everyday activities
again? When can I drive again? What about disability and Social Security payments? Ask
the hospital social workers for any further assistance and information you need.
22. Do you have a copy of my Advance Directives? (Note: This is about life support decisions. This document is important for everyone, but especially before any hospital procedure, no matter how minor.) Forms are available at most hospitals.
Thanks to
Anne McGinnis Breen
for sharing some of these questions