28 Questions to ask your medical team, maybe 150 things really, to think about and talk over with your significant others and a social worker over a period of weeks or months.
Take your time, and go slowly, especially if your symptoms are non-existent or still manageable, if it was found accidentally and is going to be elective surgery, it may not be a medical emergency and you probably have more time to check with other doctors and make sure you have full coverage for the anesthesiologist before elective surgery. If you just want it zapped quickly before you have any symptoms or seizures, you won’t ever know for sure what type of tumor it was without some surgery or at least a needle biopsy. These are questions to ask especially if he/she is recommending IMMEDIATE surgery or radiation for your apparent brain tumor, meningioma, acoustic neuroma, vestibular schwannoma. pituitary adenoma or any other presumed to be solely by visual MRI diagnosis a low-grade brain tumor etc. (meningiomas often have dural tails, a visible attachment to the middle layer of the lining of meninges called the dura matter) The post-op pathology report or a surgical biopsy will be more accurate. Initial misdiagnosis of tumor type (there are 120 types) is a common problem with MRI film readings.
. No one gets or needs answers to all these questions below at their first few appointments.
Many are things to think about discussing and planning ahead with family and loved ones or to discuss with a hospital social worker. Please bring someone you trust with you to take notes at all your appointments, no one hears or remember the entire doctor's words exactly the same way once he says probably low grade or benign. Please write down and make copies of all your current medications, supplemments and any known medical drug allergies you have to give to your doctors and have with you at all times. This information is way too important to trust to your memory alone on this issue right now.
You can get plenty of additional reading material about brain tumors and/or your planned treatment online from your search engine or at www.google.com You can easily get all the valuable free printed literature from the major national brain tumor (spelled tumour in Oz, UK or Canada) associations for your family to read and share together or read alone at their own pace.
Click on http://www.virtualtrials.com/ to see the list of brain tumor centers that give free consultations and free second opinions marked with a red star. Scroll way down to the very bottom of the first page. There is a contact list of fine doctors there too.
Please get Nancy Conn Levin and Lori Levy's excellent meningioma brochures ( they are both long-term meningioma survivors) and other meningioma resources online from the Brain Science Foundation website and Dr Paul Zelter and Dr Steven Brem and Dr Peter Black all have new brain tumor treatment planning books.
ASK YOUR MEDICAL TEAM
1. What specific operational approach, medications or procedure are you recommending for my condition? a. If it was your son or daughter what would you do? Not your first wife, or your mother-in law LOL (that’s my sick tumor humor, please forgive me)… b. Who would you recommend I go to for a second opinion? (BE SURE to get another opinion if you are not satisfied with your doctor or the hospital system and your symptoms are still manageable. Perhaps two or more if you want, men often like to triangulate, 3 can be a magic number, if two different doctors or two different brain tumor boards agree you are really good to go AHEAD
This is YOUR brain, YOU AND YOUR LOVED ONES ALL want to be fully satisfied with YOUR OWN treatment and the doctor afterwards, as well as before.
2. Ask what kind of medical equipment do you use? Do you have 3D MRI etc and computer guided treatment equipment? How old is your equipment and the radiation element? Can you explain how much radiation exposure my healthy brain will get? What are hot spots? How skilled and experienced is your staff? (There are different types of radiation, FSR, IMRT and many brand names of specific brain radiation machines now like Gamma knife, Electra knife, the Linac Accelerator, Proton Beam, Cyberknife, Novalis, Trilogy etc.) They count units called rads and greys, GK is generally one direct shot, IMRT is generally given over five weeks, and some others are in between or a few multiple doses.
3. Can I have free copies of my printed MRI report, surgical report and pathology report? a. Can I get a free copy or computer disc of my MRI film and my records? (You can send them to other major medical brain tumor centers that have free evaluations and consulting services.) b. Can I get my complete medical records on a CD? c. Can I get my post-op pathology report and send it for a second opinion to a recognized neuropathology specialist before I decide about more treatment if neededafter this treament? Many folks have written to me since I first put this list of 28 questions together in 1998 thanking me for the tip about getting a second opinion of their pathology report by sending out their tumor tissue sample slides to a national neuropathology expert after their surgery. (Note: If you ask for some personal MRI copies BEFORE the scan appointment, it maybe easier to get them for free or at a reasonable cost, if you keep your own previous annual MRI films, you are always ready for your next appointment, they can not say they lost them, and you can learn to compare MRI films yourself with your doctor on his light box if you want.
4. How many different ways of treating my condition and other craniotomy approaches are there for my tumor location? a. Will a biopsy be done first? b.Will hormone receptor tests be included in the pathology report? c.What other brain tumor pathology testing do you do currently do here? d.Why does your doctor want to do the operation or procedure one way instead of another? (Note: There are several different ways to gain access inside your skull and tiny endoscopic tools through the nose and other skull attached equipment (with screws or face masks) depending on various tumor locations and brand name equipment available) Treatment options and outcomes do vary based on your general health, age, tumor location, the hospital treatment facilities and the experience and skill of the doctors and their neurology ICU staff and nurses. Just like buying real estate, location, location, location.
5. Why do you think I need this operation or procedure now? To relieve my pain? To reduce my symptoms? To improve my body functions? To diagnose my condition/problem? To save my life? (One doctor may say you need surgery immediately, another one may say you have a few weeks to fit into his operating schedule, maybe 6 months or even a year or more to consider any future treatment if it is still small, less than 1 or 2 cms and to see if it changes or grows at all, especially if you don’t have any symptoms.
You can choose what you are going to be most comfortable with based on the medical information you have gathered and been given and your own life situation. Please do not let any nice local back and spine neurosurgeon working alone, (who may be a very smart, sweet guy, but has not done plenty of brain tumor removals) operate or radiate you or your loved one. Dr Paul Zelter says at least 50 a year, that's one a week, some good brain removal neurosurgeons at large hospitals work in teams and do several hundred cases a year )
6.What are the risks/side effects/complications or neurological deficits 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 functions and parts of my brain or spinal cord may be injured temporarily or permanently by this tumor or this treatment? How will you monitor any of my mental and cognitive changes? Can I have a full neuropsychology evaluation before my treatment as a future baseline indicator of cognitive and emotional function?
7. What are the advantages and benefits of this particular surgery or procedure? a. What is the next most frequently used treatment? Its advantages or disadvantages to standard treatment? b. How much hair will you shave? (Don’t worry it grows back). But will I lose any hair permanently from radiation? What will my followup care be and who will I go to? What if I have or develop seizures afterwards? c. Will it include annual MRI's for the rest of my life? I hope so for your own health and future security.
8. How long do you anticipate the surgery or this procedure will take? How long will my family and loved ones have to wait? Where can they wait? It may only be a few hours, or many more or even daily for five weeks depending on treatment type and possible outcomes. Hospitals often have special rates at nearby motels or Hope Houses, and free medical air flights are available if there is any real financial need. The National Cancer Institute in Bethesda, Maryland has a brain tumor study treatment program run by Dr Howard Fine that can help financially,. if they take your case, like they did Bonnie Lovetts case.
9. Is this surgery/procedure considered novel or experimental in any way? a. How many times is it performed in the US each year? b.Is there any good reason to try something that is not standard surgical care or a biopsy first so you get a pathology? Some people like to be the first for something new, how about you? Its your choice.
10. How many meningioma patients with this specific type or location of brain tumor do YOU treat each month? Annually? Can I meet or talk to some of your previous BT patients? Are any of your BT patients recovering in the hospital today? Can I visit with them? a. How does that compare to other doctors/facilities/teaching institutions in this area? Regionally? Nationally? (Maybe 11,000 to 15,000 M's were diagnosed annually fairly recently and the numbers keep growing from 4,000 a year a decade ago, before they were actually counting them at all) b.What are my own priorities now? Cost wise too, should I travel far away to a national medical center for the most well known doctor or fastest treatment and be away from home, family and friends, or is the major regional medical center or state university teaching hospital going to have skilled, competent physicians, a good neurology intensive care dept and experienced medical nursing team and be more convenient for me and my family and closer for follow-up visits in the future? Or the nearest local hospital or local GK center? Your choice.
11. What are YOUR final results with this condition and this type of surgery or treatment? (Note: Choose a neurosurgeon, radiologist, neuro-oncologist and/or oncologist and staff who have plenty of experience with removing and treating brain tumors, not just back or spine surgery.. Ask and find out how familiar they and their medical team and technicians are with their newer computerized radiation treatments and their new surgical 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? How long will I need to take them? When can I wean off of them? , When do my state laws let me drive again if I do have a documented seizure? Some doctors prefer to give anti-seizure drugs as a precautionary preventive measure. Always check with your doctor before stopping any medications, especially any anti-seizure drugs, and ask what side effects to lookout for...
13.Are there new chemotherapy treatments and clinical trial treatments available at this hospital that you know of? ( You can see a regular oncologist to ask about other drugs and chemos like hydroxyurea, tamoxifen, thalidomide, alpha interferon II, Temodol(temodar)Mifeprex [mifepristone] Corlux for Cushings symptoms,some meningioma and pituitary adenoma treatment too, (IF it is small less than 1 or2 cm or inoperable, if you do not want brain surgery or brain radiation yet for a slow growing 2 to 4 mm per year benign brain tumor with a few minor or no new symptoms)
14. Should I continue to take all my regular medications, including thyroid medicines, hormone replacement therapy? What about birth control? Would an oral contraceptive or birth control pill like Ru-486, or another selective progesterone receptor modulating compound help stop my tumor from growing or returning? 80% of benign meningiomas have high levels of progesterone receptors. (You may ask for a needle biopsy of unradiated tumor tissue sample or maybe soon some new diagnostic blood tests) What about Norplant? NO Norplant, it is contraindicated for people with intracranial lesions! NO Hormone replacement therapy, it may also contribute to tumor growth. What if I am pregnant? Or want to get pregnant? OR need extra hormones because of another condition? Some doctors do not advise pregnancy, some young women have successfully had children before and after meningioma treatment, if this is an issue, please visit the Meningioma Mommas website (Note: These tumors are often thought to be growth hormone related, some medical researchers say stimulated by pregnancy, progesterone, estrogen and/or perhaps peri-menopause hormone fluctuations and the use of HRT for menopause)
15.If I don't do anything about this problem, what's likely to happen? I know several m patients who have waited up to 10 years before they had to take any risks of surgery or radiation therapy because it didn't grow and they had no serious symptoms. Watch and wait again (WAWA) does not automatically mean whining! It means check with MRI annually, but please make sure they compare it directly to your first one, not just the most recent previous one.
16. Is one alternative to immediate invasive surgery or radiation treatment "watchful waiting"? What are the risks for me if I choose to watch and wait for a while? What if I really want to wait until I finish school, move closer to family or do some other financial planning for my family? What if I just want it done right away to avoid an agonizing wait? Make the personal decision you think you can live with and then let go and let GOD.
17. How might this surgery or treatment option affect me and my family--financially? Physically? Mentally? And last but not least, emotionally? Can I get a complete neuropsychological evaluation right now, for comparison purposes later on? Especially later on if I need ant cognitive retraining or cognitive dissonance brain rehabilitation for my mental health, not just for physical or occupational therapy.
18. What is your follow -up plan if this surgery or radiation treatment does NOT work? HOW important is this to know ahead of time? We really need to see more large published longterm patient "quality of life" records of their quality of survivorship, not just 2 to 5 years post treatment and not meaningless reports that they are still alive and the tumor shrank a bit or didn't grow anymore. We need to know what previously treated BT patients are still able to do, and how well they function in daily living, work environments and their personal relationships much later on. How many doctors continue to see their former patients? How often? Not many, not much. You are lucky if you find one that does, you may need to find a good neurologist and/or an endocrinologist, an ENT, Ear, nose and throat specialist or a neuroendocrinologist afterwards We move and they move around geographically now more than ever.
19. How much of the cost of this treatment will my own insurance/Medicare cover? How much will I have to pay out of pocket? Is the best anesthesiologist also fully covered? When or will any new employers health insurance ever cover my preexisting condition? Try not to lose the health insurance you have, look into cobra if you lose your job (Note: You may also have to call your insurance company or HMO for more information, especially if you want to go out-of-network and out of town for treatment.)
20. What effect will this surgery/procedure have on my other medical problems and medications? Double check all your drug interactions including supplements and natural products. Do you have a special Neuro ICU department and staff? It is hard to say how long anyone will be hospitalized in the Neuro ICU.(The first time I was in there for two days, the second time just for a few hours)
21. What other medical costs or medications will there be after the surgery or this procedure? a. Will I need cognitive therapy? Physical therapy, or a neurophyscologist afterwards? b. Will I still need radiation as follow-up to a careful, cautious partial surgery (called debulking) who will pay for my health care if I lose my job and my health insurance? What if they think I am lazy or indolent, or just malingering or incompetent because of some cognitive changes? Or what if they let me go because I am such a business liability? Some folks decide not to tell their new employer, but that was too stressful for me to maintain such dishonesty.
22. Can I donate blood before surgery to have on hand in case I need it? a. Can others donate blood for me too? B.Do I have time to think about this? (Donating your own blood several weeks before surgery is called "autologous donation" not often needed, but each case is different depending on tumor location and size or if it is near a major artery or not, sometimes a procedure to block some blood capillaries is performed pre-op as a first step .)
23. How much medical care and housekeeping assistance might be needed when I first return home? a. Can my family care for me? Can I get other extra nursing help if needed? b. When can I drive again? Who can drive me or my kids in the meantime? Who can bring in some meals or can I plan some frozen dinners ahead of my recovery time? You may be home in two or three days or a week, you might want to keep your head elevated or sleep in a chair, you might not be comfortable bending over and putting your head down right away, a few maybe hospitalized for several weeks and some may need vestibular balance therapy for a month or two, you may be driving again in a few weeks or not for six months or a year. Get to know the hospital social workers; they can answer a lot of questions about health insurance coverage and disability laws.
24. When will I be able to return to work, full-time, part time, and handle everyday activities by myself again? Who will help me with filling out disability insurance paperwork and social security payments if not? No one gets answers to all these questions ahead of time, but some discussion, planning and preparation just in case, might be wise to discuss and share with your significant others.
25. How long will I need medications for treatment side effects afterwards? a. What kind and how many meds? What are their longterm side effects? b. What if I am allergic to them? What allergic symptoms and/or drug interactions should I look for while on these drugs? (Last time in 2000 I just needed percodet for pain for a week. Back in 1986 I needed several anti-inflammatory drugs for swelling and antiseizure drugs for six months, the steroids made me think I was superwoman and. I was allergic to dilantin, and I got a red skin rash from it)
26. Do you have a copy of your Advance Directives? (Note: This is about life support decisions. This is a legal must before any hospital procedure and/or biopsy -- no matter how minor. Usually at large hospitals they have a notary available when you are admitted at 5:00 or 6 am ugh!) Do you have a living will, a legal power of attorney designated and health care proxy? Have you spoken to a few of your family members about how long you would want to remain on life support systems like breathing or feeding tubes if needed for your recovery? Each state has different laws; do you know what the laws are in your state? In some states, once they start with feeding tubes and respirators , it is hard to legally stop them.
27. After your treatment, please remember there is no guarantee they can prevent this condition from happening to you again. After any successful treatment we are in remission, but there is no known cure. How often will your doctor monitor your condition and give you follow-up MRI's? Semi-annual? Annual? It often depends on your doctor and your current insurance plan. Contrary to many current medical opinions, it still seems to me from available national statistics that the longer you have without any regrowth or any new recurrence, the more essential it is to carefully monitor your condition beyond 5 years into the unknown and unpredictable future.
As much as we would like to forget about it and get on with our lives like I did in 1986. It was finally documented again at 2 cm in 1992, six years later, after a few years of good clean MRI scans. Either they didn't accurately report its gradual regrowth from one year to the next, or the small residual tumor had a sudden growth spurt in late 1992, the same year I had a total hysterectomy for large fibroids and was automatically given estrogen shots and the old Premarin HRT for “ instant menopause" in those days.
28. Where can I get a SECOND and third opinion about all this? (Note: Many HMO insurance companies and Medicare required to pay for the second opinion, but you must often ask specifically for a second opinion from your insurance company. If a doctor protests, instead of agreeing and/or even recommending another highly respected INDEPENDENT, OUTSIDE doctor for a second opinion, you probably don't want him anyway!)
Go to www.virtualtrials.com to see the brain tumor centers list marked with red stars that still give free consultations. We used to all get free individual consultations from BT experts who volunteered at major national brain tumor conferences,, but that is not quite as common now either. EXCEPT IN NYC call Dr Patrick Kelly about early detection with MRI methods This is my short version, NOT REALLY, but without all my feisty editorial comments about glossy medical marketing brochures, the short term results, some medical insurance executives who try to practice medicine by rewarding doctors for not prescribing as many tests and the radiation brand name advertising materials. Etc, etc
Please read some of my other old posts before they disappear and become history which is always a mystery. The drug Mifepristone, a progesterone modulating compound I am taking since Feb 05 was used on meningiomas in France almost thirty years ago now, but its still not offered as a reasonable alternative drug therapy in the US because of FDA policy and political issues of male DENIAL and DOMINATION of women's health issues and reproductive health service options in full swing, or should I say still in a spin cycle of control and claims denial.
DENIAL is not just a river in Egypt. Reminds me of the incredible 12 year GBM survivor David Bailey singing a lovely song about the life-giving waters of the "Lost River" on one of his old cds, but the river wasn't lost at all he says, it was the people who were lost in the desert and several tribes didn't find the river again for many generations. It still happens today.My original 1998 version graciously shortened by Alan to one page of 28 questions to ask is currently on Alan's M pages at http://groups.msn.com/Meningioma/yourwebpage.msnw
This document is based on a list of ten general hospital admittance questions send in to the JHU m list by another dear meningimate from a 1997 Seattle Heart Hospital newsletter and my personal experiences.I have continuously updated it and revised it for the past ten years as excellent additional suggestions were sent in by survivors and loved ones to the JHU m list. I sent it out individually to many loved ones for their particular family member because it is too long for one email and I was told it was too scary, but I believe it is realistic . There are always more horror stories from friends of my friends who knew of my own brain tumor history; suddenly brain tumor patients seem to be everywhere!
The JHU m list was the first of its kind specifically for meningioma patients and their loved ones. The Healing Exchange Brain Trust m list was the very first of its kind and is the only one run by a group of BT survivors Believe you me, you should have seen the original standard online meningioma patient consultation form that dear Dr Williams posted online in those early days. Dr Williams, 50, died suddenly working out in the gym at JHU. He was a great man, one of the very few neuro-oncology doctors to have advanced medical degrees in both neurosurgery and brain radiation oncology treatment. In 1997 his standard patient form at JHU was a long list with rows and rows of boxes and spaces to list the individual dates of diagnosis and treatment of multiple tumors and multiple surgeries and radiation treatments the patient had previously had before coming to the experts at JHU. But that inadvertant warning form is long gone now, and the best neurosurgeons can often safely remove the entire tumor now without causing any permanent brain injury or recurrence Seeing that form scared me good into becoming my very own best medical health care advocate, doing my own medical meningioma research reading for homework.
And I still try to share what I think, so that others will have the incentive to carefully organize their own best treatment plan and avoid the “ambulance chasers” so they can continue to function and live successfully with this now more often chronic longterm condition. KISS, keep it simple sweetie, or keep it simple stupid, but always KISS, use whichever interpretation really self-motivates you to keep on keepin on!. You can try motivating yourself and others either way one time or another lol LOL We catch more bees with honey and if reverse psychology becomes much more popular we might all become bipolar lol KOKO Keep on Keepin on!
Just Never give up. GOD LOVES YOU ! KOKO I love you too my online M friends, guys and dolls. Drink lots of plain water all right? Eat right and sleep right too of course, it might be hard to find your new normal for a while. Just remember three lefts can make a right lol and please keep an open mind, lol that shouldn't be too hard after brain surgery, at least none of us are real airheads, there is CSF fluid in the gaps between ventricles. (Sick tumor humor, forgive me) Keep on walking, and talking and writing to those you meet along this spectacular journey we all share called life. It is a very precious gift for me to still be functional and able to share new hope, my layperson’s understanding and a few words of caution to others.
Please email me at anne91547@aol.com if you have any concerns, questions or comments and be not afraid.GBYAY Anne McGinnis Breen, now a twenty two year survivor of recurrent meningioma, diagnosed in 1986 at age 39, 5 cm in diameter in my left temporal lobe, orbital zygomatic approach craniotomy in Oct 1986, working full time one year later, and raising our three young kids, then a SWOG 9005 Phase 3 clinical drug trial of Mifepristone with Dr Steven Grunberg for four years and then a second craniotomy in 2000 at Barrows Neurological Institute in Phoenix,Az by Dr Robert Spetzler and his fine team of doctors, now on Mifepristone, brand name Mifeprex again since Feb 05.to current Dec 08 It is hard to find a doctor willing to prescribe Mifepristone for meningiomas,. But it now has another brand name Corlux also for Cushing’s disease symptoms of tumors or adenomas in or near the pituitary gland, BTW Dr. Cushing was the great neurosurgeon who named meningioma tumors many years ago and both of these tumor types have a much higher ratio of female cases..
