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| List of questions to think about and ask medical team |
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Dear Meningimates
This list is for our new readers. Welcome to the medical emailing lists no one wants to join, but we are glad they are here. Please take a family member or friend to take notes or tape the discussion at all your doctor appointments. We often are so nervous we only hear part of what is said, or hear it differently than our significant other. No one gets answers to all these questions at one doctor's appointment, they are meant for you and your family to think about and discuss with your entire medical team. Please make sure your neurosurgeon has the skills to treat your condition, not mostly a back or spinal cord neurosurgeon.
Some patients take paper copies of all their current medications, an allergic reactions list and insurance details to bring to all their appointments to cope with the filling out forms frustration. Seventeen years ago I didn't know how to spell or even pronounce meningioma. (Men in jee oma) I am an experienced bt patient now. I hope this list helps you get the best health care for your condition with no unexpected surprises.
PRINT THIS OUT TO PUT IN YOUR MEDICAL NOTEBOOK IF YOU HAVE ONE
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Questions to ask your medical team or doctors and other things to think about
especially if he/she is recommending immediate surgery or radiation or both for your
meningioma or any other low-grade brain tumor:
1. What specific operation or procedure are you recommending for my condition?
a. If it was your son or daughter what would you do?
b. Who would you recommend I go to for a second opinion? (BE SURE to get
another opinion outside the practice, if you are not satisfied with your doctor and your symptoms are still manageable. Perhaps two or more if you want, this is YOUR brain, you AND your loved ones want to be satisfied with your doctor and his schedule and experience.) Use the www.google.com search engine to search for some keywords, neurosurgery, meningioma, etc
2. Do you have any free reading materials about my meningioma?
(If you do nothing else now, please call the numbers below and ask for the three National Brain Tumor Associations free handbooks about brain tumors, brochures about meningiomas, coping with treatments and sign up for the quarterly newsletters for your family to share together and read off line, at their own pace and your own pace and leisure to avoid computer information overload and more family stress)
The American Brain Tumor Association in Chicago 800-886-2282
email to info@... or www.abta.org
The National Brain Tumor Foundation in San Francisco 800-934-2873
email to nbtf@... or visit www.braintumor.org
Brain Tumor Foundation of Canada 800-265-5106
email to exec.director@... or visit www.btfc.org
The Brain Tumor Society in Boston 800-770-8287
info@... or visit www.tbts.org
and visit The Central Brain Tumor Registry of the US 630-655-4786
email to cbtrus@aol.com or visit www.cbtrus.org
The Healing Exchange Brain Trust 877-252-8480
http://www.braintrust.org (meningioma@... (Meningi-Mates))
(has specific support groups for different bt types)
http://meningioma.intranets.com Alan's online meningioma support group
3. What kind of equipment do you use? Do you have MRI guided microscopic surgery treatment? How old is your equipment? Can you explain what kind and how much radiation I will receive? What about longterm radiation injury? Measured in units called grays. (There are several different types of FSR, IMRT and many brand names of brain radiation machines like Gamma knife, Electra, Linac Accelerator, Peacock IMRT, Proton Beam, Cyberknife, etc.) More info at www.ira.org
a. Can I have free copies of my printed MRI reports?
b. A free copy of my own set of MRI films?
c. Can I send my MRI films and medical reports to other major medical locations that have evaluations and consulting services? -- this is a good way to get information and an independent second opinion from some of the best places in the country. See www.virtualtrials.com for a list
(Note: If you ask for copies of personal MRI film BEFORE the scan imaging appointment starts, it maybe easier to get them for free or at a reasonable cost. Then if you keep your own set of surgical reports, pathology reports, you are always ready for your next check up appointment and can learn to make your own previous comparisons of size and location of tumor.)
4. Are there different ways of treating this condition or doing this procedure?
a. Will you do a biopsy first? Will I need an embolization? (only some do)
b. Will hormone receptor tests be included in the pathology report?
c. Why do you want to do this operation or procedure one way instead of
another? (Note: There are several theories and ways to access inside your
skull or nose with endoscopic tools and the attached equipment depending on your tumor location, your age and health and the brand names of different equipment, etc.)
5. Why do you think I need this operation or procedure? How soon? To relieve my
pain? To reduce my symptoms? To improve my body function? To diagnose my
condition/problem? To save my life? (One doctor may say you need surgery or radiation immediately, another one may say you have a few weeks, months or even a year or several years more to consider treatment plans, you can choose what you are going to be comfortable with, based on your own symptoms, and the medical information you have gathered and been given)
6. What are the risks/side effects/complications associated with my condition
or this procedure and/or medications? And afterwards?
a. Is it written down anywhere for me in printed materials?
b. How common are these risks/side effects/complications?
c. What is the current location and size of my tumor? What physical or mental functions and parts of my brain or spinal cord may be effected by this tumor or this
treatment? How common are they?
7. What are the advantages and benefits of this particular surgery or procedure?
a. What is the next most frequently used treatment? Its advantages,
disadvantages? Do you have ten or fifteen year survivors I could speak to?
b. What will my followup care be like? Will I need rehab therapy or a neurologist?
c. Will it include at least annual MRI's for the rest of my life?
8. How long do you anticipate the surgery or this procedure will take? How
long will my family and loved ones have to wait? Hours, Days or weeks? Where can they wait? (Contact the hospital social workers for assistance)
9. Is this surgery/procedure considered experimental in any way?
a. How many times is it performed in the US each year?
b. Is there good reason to try something that is brand new, investigational or not
standard?
10. How many meningioma patients with this specific type of condition do YOU
treat this way each month? Annually? Can I meet or talk to some of them?
a. How does that compare to other doctors/facilities/teaching medical institutions
in this area? Regionally? Nationally?
b. What are my priorities now? Cost wise too, should I travel far away to a
major medical center for the most well known doctor or neurological treatment and
be away from home, family and friends, or is the major regional medical
center or university hospital going to have a skilled, competent physician,
and team and be more convenient for me and my family and closer for follow-up
visits in the future? Is my condition an emergency? How current is my doctors info?
11. What are YOUR results with my condition and this type of surgery or radiation
treatment? (Note: Choose a neurosurgeon, radiologist, neuro-oncologist or oncologist who has plenty of experience. Ask and find out how familiar he or she and their
team are with their newer treatments and their own new equipment too)
12. What kind of anesthesia and pain killers will be used? Is there a choice?
What are they? How long will I need them? What about anti-seizure meds? Steroids? Do I need them? For how long?
13. Are there any medical chemotherapy treatments available that you know of?
Clinical Trials? What medical literature does your doctor read to stay up to date? Go to www.virtualtrials.com (See an oncologist to ask about hydroxyurea, tamoxifen, thalidomide, alpha interferon II and RU-486 [mifepristone] or other drugs for meningioma or recurrent meningiomas)
14. Should I continue to take all my regular medications, including thyroid
medicines, hormone replacement therapy? Birth control? What about Norplant?
NO Norplant! What if I am pregnant? Or get pregnant? (Note: These tumors are
thought to be hormone related, some medical researchers say stimulated
by pregnancy, progesterone, estrogen and/or perhaps peri-menopause especially in females)
15. If I don't do anything about this problem, what's likely to happen? When? What are TIA's? (Transient ischemic attacks) Stroke symptoms? Seizures? Brain injury?
16. 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?
17. How might this tumor, surgery or treatment option affect me and my family --
financially? Physically? mentally? And last but not least, emotionally? Now
and later on.
18. What is your follow-up plan if this surgery or treatment does NOT remove or shrink the tumor? How important is this to think about ahead of time? Do you know how many bt patients end up having both surgery and radiation eventually?
19. 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.)
20. What effect will this surgery/radiation procedure have on my other medical problems and medications? How long do you think I will be hospitalized? In Intensive Care Unit? What about risks of drug interactions or secondary infections?
21. What other medical costs and medications will there be after the surgery or
this radiation procedure? For how long?
a. Will I need cognitive therapy? occupational or physical therapy?
b. Neurophyscological testing? Maybe before and/or after treatment?
c. Will I still need more radiation or surgery? When? What for? Who will pay? (Accurate numbers for bt survival rates and quality of life issues for longterm treatment outcomes are still vague and not well documented after two to five years post-op. There is still no significant longterm follow-up, or accurate medical information about subsequent neurological deficits, chronic physical limitations, or individual personal diabilities that might prevent return to fulltime work or continued function normally later on.
22. Can I donate blood before surgery to have on hand in case I need it?
a. Can others donate blood for me too? Will I need an embolization?
b. Do I have time to think about this surgery or treatment? How much time?
(Donating your own blood before surgery is called "autologous donation." and is
not usually needed for most brain surgery, but is done several weeks before
surgery)
23. When do you think I will be discharged from the facility/hospital/institution?
a. How much medical care and personal assistance might be needed when I return
home? How soon can I be safely home alone?
b. Can my family care for me? Can I get extra help? When can I drive again?
What kind of home health care is available and how much will it cost?
24. When will I be able to return to work, full-time, part time, and handle everyday
activities again? What about cognitive rehabilitation, Unemployment or Disability
and Social Security payments? Job security?
25. How long will I need medicine afterwards? How often will I be followed up?
a. How many meds? What are their side effects?
b. What if I am allergic to them? What symptoms should I look for?
26. Do you have a copy of my Advance Directives? (Note: This is about life
support decisions. This is a must before any hospital procedure/and/or biopsy
-- no matter how minor. Usually at large hospitals they have a legal notary
available)
27. After this treatment, can I prevent or monitor this condition if it ever happens
again? When will I have follow-up MRI's or CT scans? Semiannual? Annual?
28. Where can I get a SECOND opinion about this? (Note: Many HMO insurance
companies and Medicare pay for a second opinion, but you must often ask
specifically. If the doctor protests, instead of recommending another independent
respected doctor for a second opinion, you probably don't want him anyway! hehehe)
KOKO! I hope and pray this long questions list helps you and your family be well organized and prepared. (Forewarned is forearmed in my M-ind and I'm better now.) Take several deep breaths, stand up! (((((Go for a long walk and/or relax now for a while, while it prints out.))))) Hugs to you all!
The brain tumor conferences are SO ENERGIZING!!! It is so great to see my some of my Meningimates if ever so briefly. The next big bt conference I know about is the ABTA BT Conference in Chicago in July, maybe I will see you there.
BRAIN TUMOR AWARENESS WEEK is in May to speak to legislators and meet with other brain activists. The bill amendment that passed to count all brain tumors is HR 239. PLEASE Write email to your congressmen to support the funding for it now! How can they measure or predict various treatment outcomes, if they do not keep track of our longterm non-confidental medical data for their statistics!
questions? email to anne91547@...
GBYAY Anne McGinnis Breen
Surviving and thriving seventeen years after two major craniotomies and a NCI SWOG 9005 Phase Three clinical trial (ALWAYS GET ANNUAL MRI's after any diagnosis or treatment) Left sphenoid wing meningioma, temporal lobe behind my left eye, my first surgery was 1986, age 39 St. Mary's Hospital, Tucson, Arizona and the second for recurrence, age 53 January 2000, Barrow Neurological Institute, Phoenix, Arizona, Dr. Robert Spetzler and his team are among the best in the West!!! visit www.thebni.com
KOKO!!! means Keep on Keepin ON!!!!
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