http://www.abta.org/tumor_treatement/129-2
This 2009 good initial diagnosis article explains some genetic mutations of meningiomas without mentioning that previous ionizing radiation exposure is a known contributing factor to meningioma growth.(just google the term (radiation induced meningioma for proof) Or the established medical fact that 70-80% of low grade meningiomas and some other low grade brain tumors have high progesterone receptor levels. Or that the use of this safe anti progesterone agent Mifepristone has the potential to block the growth of benign meningiomas with high progesterone receptor levels, especially if given before radiation therapy, if hormone receptor level testing is done on the tumor tissue after surgery or biopsy and included in the pathology report. Sadly, you may still have to ask for this hormone receptor testing for brain tumors, I did in 2000. So far, hormone therapy is only popular in more advanced medical research done in breast cancer. (Makes me wonder if they care more about our boobs than our brains LOL) I sure wish I could pay for Phase 3 clinical trial testing needed to get this safe drug FDA approved for standard initial and/or recurrent meningioma treatment. Then it would no longer be an off label use in the US. I sure wish our Congress and the Executive branch would respect the FDA and NIH government research done at the University of Rochester Hospital in NY State 2006 that has proven mifepristone is safe and effective for all women for longterm low dose use for uterine fibroid tumors, instead continuing to overrule FDA results. Years ago one excellent former Director of the FDA Womens Health Department, Susan Woods resigned in protest over this political power struggle, yet it still continues.
GBYAY Anne McGinnis Breen
Friday, May 28, 2010
Wednesday, May 19, 2010
Sample patient letter meningioma reply I wrote
Welcome to our meningioma online support group,
Especially new readers, like Karen and Bernadine(your emails included below)
Sorry I didn’t see any other email from either of you or from anyone on this entire site for several weeks, until I sent in the Florida January conference notice yesterday. So sorry you have to be here, but so glad you came to ask us any questions you may have. I really like to share my own opinions, and I don't expect everyone else to agree with me. I am not a doctor or a nurse, just another meningioma patient who has been around online a long time and read tons of emails about what their doctors said or didn't say to my dear meningimates, especially about a small tumor less than 2 cm.
Bernadine, honey,there are almost as many medical opinions about our brain tumors and how to treat them, as there are surgeons, radiologists and neurology doctors too LOL &;>)
Especially if we happen to remind them of their first wife or their former mother-in law! LOL
Always ask them what if it was your own son or daughter what would you do?
I had a complete physical by a doctor of internal medicine three weeks before discovering I had a solid mass 5 cm lower wing temporal lobe tumor at age 39. He wrote I was a mildly overweight middle aged lady and he could not find anything wrong with me....I think I reminded him of his first wife LOL
IA few of our meningimates (my personal affectionate term for all of us and our loved ones) have waited ten years before having any treatment because it was small, less than 1 cm , wasn't growing after six months or a year and they didn't have any major visible symptom. The risks of major side effects from both standard treatments can be worse than the original tumor symptoms sometimes depending on your age, your general health and your other medical conditions etc
IF they are like multiple warts or small like a tiny cyst, less than 1 cm and was/were found incidentally on MRI while checking for something else, you may want to monitor your condition for a while. My headeaches were not the same increasing growing pain cycle that lasts for hours like the migraine headaches my sister always had, I had no aura, no bad reaction to bright light like she had, I had fast sharp stabbing sinus pain and sudden fainting spells, several moments of profound muscle weakness and temporary complete loss of vision. And symptoms and treatment options do vary depending on the tumor size and its location in the brain
I suggest you each get another independent medical opinion from another excellent specialist in brain tumor removal, not simply another very nice local neurosurgeon who mostly does back or spine surgery at your local community hospital, not another neurologist either.
Do you have copies of your own MRI films to send to another brain tumor center of excellence for a free consultation?
The website www.virtualtrials.com has a list of these places marked with a red star where you can send your medical records to an experienced bt doctor for a free consultation and second or third opinion.
DEAR Karen. IMHO MRIS are sort of a doctor's guessing game they get it right and win about 80% of the time guessing what type of tumor it is by its location and appearance on MRI. Have it checked again in the first six months or year or two to see if it is growing or changing at all, if it doesn't change much at all, or only a few mm it is probably a low grade primary brain tumor like a meningioma or acoustic neuroma or vestibular shwannoma, but there are over 120 different primary brain tumor types.
You are right a needle biopsy or brain surgery is the only way to know the exact type and grade of tumor for sure documented in a pathology report, and "finally, although your Ehlers-Danlos Syndrome (EDS) can be more than enough to cope with, however it does not protect patients from anything else anyone can get. Since many Rheumatologists also practice internal medicine, EDS patients would be well advised to consider finding an internist as a primary car physician who is also a Rheumatologist. This way, there will be perfect integration of general and specialty care" quote I have taken from an EDS website.
So, at some level the Rheumatologist has a lot to offer a patient like you with Ehlers-Danlos Syndrome including proper nutrition or alternative ways to exercise and do other things.
I think we ought to get second opinions on our pathology reports from a skilled neuropathologist, not just a local general pathologist who may not have seen all the different primary brain tumor types under a microscope before... and by the way, most low grade meningiomas look alot like uterine fibroids to pathologists, and unless the slide is marked abdomen or skull they might not be able to tell the difference with microscopic visual comparison alone.
DEAR Bernadine,
I went back to full time work a year after my first surgery back in 1986 If you have multiple brain tumors like meningiomas, you might need to read more yourself and google an inherited condition called Neurofibromatosis 1 and 2 called NF1 or NF2 Did your doctor mention anything about that? The NINDS US government website is a good resource of reliable medical information on Neurofibromatosis 1and 2.
And you can ask for vestibular therapy exercises for your dizziness and balance problems right now, you don't have to wait for it to get worse hon I think that is pretty disgusting, if they do not offer you immediate rehab and information about local places to get physical therapy for balance retraining exercises that can help you improve your balance in a few weeks, if you do the daily exercises they teach you regularly every single day for a month at many outpatient physical rehabilitation centers.
Some good doctors are very cautious, some good doctors are very aggressive, both kinds of doctors might be good and/or the right one at one time or another for each one of us...We are each so unique, all different ages, some with diabetes or some another health condition which may complicate or change the treatment plan for anyone of us. Did you have any seizures before, is that what the neurontin is for hon? Some tranqulizers and/or seizure control meds do overlap with mood regulating drugs be sure to check the side effects or interactions of all your meds at rxlist.com.
Surgery is the most frequent and generally the best way to find out what type and what grade of tumor it is first, but some people are just not good candidates for surgery or radiation.
and doing a needle biospy is almost just like surgery anyway, they still have to drill a hole in your head, so, some docs say they might as well only drill that hole once so you only take the surgery risk once... ,
Move onward and forward with hope in your heart, KOKO Keep on keepin on !!! even if you have to take baby steps at first, regular walking exercise is absolutely the very best thing we can do for our brains at any age, even if we have to start over again with a walker, we can improve if we work hard enough . I really ought to being doing it more daily myself. I used to feel better when I did walk briskly even three days a week, and drink more water, and eat well washed apples, grapes and especially bananas LOL
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
"Hope has two daughters--anger and courage: anger at the way things are and the courage to work to make things other than they are." -- Saint Augustine
Courage in women is often mistaken for insanity.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!
-----Original Message-----
From:
To: meningioma@listproc.hcf.jhu.edu
Sent: Tue, 30 Dec 2008 5:16 pm
Subject: [meningioma] Re: b enign meningioma
dearkaren,Ihave beendealing withbenign meningiomas for 5 years now. I am not happy with John Hopkins. I still am dizzy,imbalance,andheadaches,I takeNeurontindaily.Ido doctor with myentandear hospital too.Believe it or not I still teach. y husband has had 2 open heart surgeries.I get so discussed sometimes because my neurologist says he's not sure if the meningiomas are causing these symptoms.He's blaming the symptoms on migraines. MeantimePittsburgh Ear wanted to do surgery when I first found out.5 years ago I went deaf in my right ear .I was sent for an MRI and found 3 meningiomas.who do i believe?really discussed.
bernadine
--- On Tue, 10/16/07, Karen < >
Subject: benign meningioma
To: meningioma@listproc.hcf.jhu.edu
Date: Tuesday, October 16, 2007, 2:56 AM
After complaining of headaches and dizziness for many months, my ENT sent me for
an MRI. The radiologist said it showed a small benign meningioma. I was
referred to a neurotologist at the House Ear Clinic in Los Angeles. My hearing
and balance tests were within normal limits, but I am still symptomatic.
the doctor said that he has many patients with meningiomas that he just keeps
an eye on. After I left the appointment, I started to google!
Can a doctor tell for sure by looking at the films that a tumor is benign
without a biopsy.
I have Ehlers Danlos Syndrome which is a lack of collagen in the connective
tissues and am not sure if this plays a role in it.
Any advice is greatly appreciated.
Karen
Especially new readers, like Karen and Bernadine(your emails included below)
Sorry I didn’t see any other email from either of you or from anyone on this entire site for several weeks, until I sent in the Florida January conference notice yesterday. So sorry you have to be here, but so glad you came to ask us any questions you may have. I really like to share my own opinions, and I don't expect everyone else to agree with me. I am not a doctor or a nurse, just another meningioma patient who has been around online a long time and read tons of emails about what their doctors said or didn't say to my dear meningimates, especially about a small tumor less than 2 cm.
Bernadine, honey,there are almost as many medical opinions about our brain tumors and how to treat them, as there are surgeons, radiologists and neurology doctors too LOL &;>)
Especially if we happen to remind them of their first wife or their former mother-in law! LOL
Always ask them what if it was your own son or daughter what would you do?
I had a complete physical by a doctor of internal medicine three weeks before discovering I had a solid mass 5 cm lower wing temporal lobe tumor at age 39. He wrote I was a mildly overweight middle aged lady and he could not find anything wrong with me....I think I reminded him of his first wife LOL
IA few of our meningimates (my personal affectionate term for all of us and our loved ones) have waited ten years before having any treatment because it was small, less than 1 cm , wasn't growing after six months or a year and they didn't have any major visible symptom. The risks of major side effects from both standard treatments can be worse than the original tumor symptoms sometimes depending on your age, your general health and your other medical conditions etc
IF they are like multiple warts or small like a tiny cyst, less than 1 cm and was/were found incidentally on MRI while checking for something else, you may want to monitor your condition for a while. My headeaches were not the same increasing growing pain cycle that lasts for hours like the migraine headaches my sister always had, I had no aura, no bad reaction to bright light like she had, I had fast sharp stabbing sinus pain and sudden fainting spells, several moments of profound muscle weakness and temporary complete loss of vision. And symptoms and treatment options do vary depending on the tumor size and its location in the brain
I suggest you each get another independent medical opinion from another excellent specialist in brain tumor removal, not simply another very nice local neurosurgeon who mostly does back or spine surgery at your local community hospital, not another neurologist either.
Do you have copies of your own MRI films to send to another brain tumor center of excellence for a free consultation?
The website www.virtualtrials.com has a list of these places marked with a red star where you can send your medical records to an experienced bt doctor for a free consultation and second or third opinion.
DEAR Karen. IMHO MRIS are sort of a doctor's guessing game they get it right and win about 80% of the time guessing what type of tumor it is by its location and appearance on MRI. Have it checked again in the first six months or year or two to see if it is growing or changing at all, if it doesn't change much at all, or only a few mm it is probably a low grade primary brain tumor like a meningioma or acoustic neuroma or vestibular shwannoma, but there are over 120 different primary brain tumor types.
You are right a needle biopsy or brain surgery is the only way to know the exact type and grade of tumor for sure documented in a pathology report, and "finally, although your Ehlers-Danlos Syndrome (EDS) can be more than enough to cope with, however it does not protect patients from anything else anyone can get. Since many Rheumatologists also practice internal medicine, EDS patients would be well advised to consider finding an internist as a primary car physician who is also a Rheumatologist. This way, there will be perfect integration of general and specialty care" quote I have taken from an EDS website.
So, at some level the Rheumatologist has a lot to offer a patient like you with Ehlers-Danlos Syndrome including proper nutrition or alternative ways to exercise and do other things.
I think we ought to get second opinions on our pathology reports from a skilled neuropathologist, not just a local general pathologist who may not have seen all the different primary brain tumor types under a microscope before... and by the way, most low grade meningiomas look alot like uterine fibroids to pathologists, and unless the slide is marked abdomen or skull they might not be able to tell the difference with microscopic visual comparison alone.
DEAR Bernadine,
I went back to full time work a year after my first surgery back in 1986 If you have multiple brain tumors like meningiomas, you might need to read more yourself and google an inherited condition called Neurofibromatosis 1 and 2 called NF1 or NF2 Did your doctor mention anything about that? The NINDS US government website is a good resource of reliable medical information on Neurofibromatosis 1and 2.
And you can ask for vestibular therapy exercises for your dizziness and balance problems right now, you don't have to wait for it to get worse hon I think that is pretty disgusting, if they do not offer you immediate rehab and information about local places to get physical therapy for balance retraining exercises that can help you improve your balance in a few weeks, if you do the daily exercises they teach you regularly every single day for a month at many outpatient physical rehabilitation centers.
Some good doctors are very cautious, some good doctors are very aggressive, both kinds of doctors might be good and/or the right one at one time or another for each one of us...We are each so unique, all different ages, some with diabetes or some another health condition which may complicate or change the treatment plan for anyone of us. Did you have any seizures before, is that what the neurontin is for hon? Some tranqulizers and/or seizure control meds do overlap with mood regulating drugs be sure to check the side effects or interactions of all your meds at rxlist.com.
Surgery is the most frequent and generally the best way to find out what type and what grade of tumor it is first, but some people are just not good candidates for surgery or radiation.
and doing a needle biospy is almost just like surgery anyway, they still have to drill a hole in your head, so, some docs say they might as well only drill that hole once so you only take the surgery risk once... ,
Move onward and forward with hope in your heart, KOKO Keep on keepin on !!! even if you have to take baby steps at first, regular walking exercise is absolutely the very best thing we can do for our brains at any age, even if we have to start over again with a walker, we can improve if we work hard enough . I really ought to being doing it more daily myself. I used to feel better when I did walk briskly even three days a week, and drink more water, and eat well washed apples, grapes and especially bananas LOL
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
"Hope has two daughters--anger and courage: anger at the way things are and the courage to work to make things other than they are." -- Saint Augustine
Courage in women is often mistaken for insanity.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!
-----Original Message-----
From:
To: meningioma@listproc.hcf.jhu.edu
Sent: Tue, 30 Dec 2008 5:16 pm
Subject: [meningioma] Re: b enign meningioma
dearkaren,Ihave beendealing withbenign meningiomas for 5 years now. I am not happy with John Hopkins. I still am dizzy,imbalance,andheadaches,I takeNeurontindaily.Ido doctor with myentandear hospital too.Believe it or not I still teach. y husband has had 2 open heart surgeries.I get so discussed sometimes because my neurologist says he's not sure if the meningiomas are causing these symptoms.He's blaming the symptoms on migraines. MeantimePittsburgh Ear wanted to do surgery when I first found out.5 years ago I went deaf in my right ear .I was sent for an MRI and found 3 meningiomas.who do i believe?really discussed.
bernadine
--- On Tue, 10/16/07, Karen < >
Subject: benign meningioma
To: meningioma@listproc.hcf.jhu.edu
Date: Tuesday, October 16, 2007, 2:56 AM
After complaining of headaches and dizziness for many months, my ENT sent me for
an MRI. The radiologist said it showed a small benign meningioma. I was
referred to a neurotologist at the House Ear Clinic in Los Angeles. My hearing
and balance tests were within normal limits, but I am still symptomatic.
the doctor said that he has many patients with meningiomas that he just keeps
an eye on. After I left the appointment, I started to google!
Can a doctor tell for sure by looking at the films that a tumor is benign
without a biopsy.
I have Ehlers Danlos Syndrome which is a lack of collagen in the connective
tissues and am not sure if this plays a role in it.
Any advice is greatly appreciated.
Karen
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