I'm so glad you found my blog, welcome to all, especially our dear new readers and my old bt friends, both caregivers and patients.
(Anyone with a newly diagnosed or recurrent brain tumor after a radiologist doctor has read MRI or CT scans of the head is probably in shock right now)
Sorry to be so blunt with you dear new bt readers... but we are all blown away at first and I became very depressed for a while when they told me it had returned in the same place six years later after a successful total resection the first time. Second look surgery is becoming more common especially for younger people.
GK (Gamma Knife)Cyberknife, Trilogy or any linac brain radiation therapy is not an non-invasive option or cure in the usual sense of that word, except in the medical business marketing departments of a new GK unit for profit facilities before they treat you. Radiation therapy is basically pallative care for terminal conditions and some very aggressive brain tumors can and do come right back after either surgery or radiation. The smaller medical facilities that have recently invested in GK machines do want you to be their customer or patient client IMMEDIATELY, but they will not be able to help you if it comes back more aggressively in the unknown future.
Please get second opinions from a neurosurgeon, an endocrinologist and a skilled neuro oncology doctor before you are treated by anyone for a primary brain tumor. There is a new FDA approved drug therapy Korlym available now for primary brain tumors centrally located inside your brain, on or near the pituitary master gland. They are often called pituitary adenomas and can cause Cushings syndrome.
Brain surgery to remove the tumor is generally considered the best method of care by most neurosurgeons, then they can find out exactly which one of 120 or 150 brain tumor types you may have. Some places do a needle biopsy and a neuropathology report of your original tumor tissue to design an individualized treatment plan for you to receive specific personalized medications instead of an established standard of care for your follow up plan.
The exact size/type and tumor grade you may have can not always be reliably determined by MRI or CT Scans alone (they get it right about 80% of the time) and after brain radiation therapy if it comes back, the original tumor type may never be known because of additional DNA mutations and tissue changes after radiation treatment. Radiation therapy destroys the original tumor histology. I think that's a fancy marketing way not to say radiation therapy can cause cancer later on in life. I do not say I have brain cancer out loud or even to myself... Based on my belief that where there is a will there is a way, I trust God's will to provide for my future safety, I'm sort of a bit more childlike and more emotional than was normal for me. God knows and he must have planned it that way for a reason. Its not going be my way or the highway,so much as God's will expressed in his own way. And I am certainly not in control or in charge of anything much beyond my own behavior anymore. Nor am I the first person to use mind over matter to help my brain heal itself.
Neurogenesis, the birth of new adult brain cells is a proven fact now. Its not just an overly optimistic neuroscientific theory anymore, like it was twenty years ago the first time I read about it. Adults can grow tiny brand new brain cells with cognitive retraining and structured motivational guidance to avoid depression or apathy in about 4 to 6 weeks using good habit patterns and holistic cognitive, social and physical techniques. The human mind/body/spirit biochemical interconnections for self improvement and self control are also known biomedical facts now. Encouraging daily habitual practice and various types of physical repetition, like walking exercise and music therapy are essential ingredients most bt patients can add to their own persistence and determination to finish a task without becoming totally frustrated. Therapists and loved ones can encourage new learning by cueing and prompts to start with individual baby steps, breaking tasks down into smaller individual goals just like a toddler beginning to walk.
You may want and/or need to go to a major regional city medical center or excellent university hospital for brain tumor care. Some meningioma brain tumors which are usually low grade tumors are caused by cummulative radiation injury after short or long latency periods of many years. I hope I didn't scare you when I sent the neuroscientists research report about longterm brain injury from prior radiation exposure. If it is very small, less than 1 or 2 cm, or if they say it is inoperable they may recommend having GK radiation without having any needle biopsy. Some may want to operate right away or watch it by MRI for three to six months or a year to see if it grows at all.
I advise active monitoring by MRI "watching and waiting" especially if you do not have any serious symptoms yet. Some people may have other serious health conditions which make surgery impossible, or it maybe located deep in the brain in a location that is too difficult for some cautious local neurosurgeon who mostly does back and spine surgery. To have the tumor removed completely you want to find the best facility that has a neurosurgery department w/speciality team of doctors and trained staff to remove brain tumors and give intensive neurological care post op. Not a nice popular local back and spine surgeon. Please check to find out if he removes at least fifty brain tumors each year so he has had plenty of practice. A needle biopsy can identify a small more aggressive type of brain tumor that probably will reoccur in less than a year or two after either surgery or brain radiation anyway. However there is no way to be sure what type of tumor it was by pathology after radiation treatment scrambles the DNA if it comes back again in 5 to 10 years and you might need more surgery anyway. There maybe other longterm side effects from radiation necrosis or swelling called brain edema, and other drugs you may need for the rest of your life, if the master pituitary gland receives any scattered radiation injury from exposure to radiation hot spots, if it hits bone or is deflected by small bony surfaces inside the brain.
GK may seem like a sure quick fix right now, and you may still be fine in a few years, but the longterm survival results are not guaranteed to be any better than actual brain surgery, we have had meningioma patients online here before who have had recurrence or other new mulitple tumors discovered either after GK therapy or after surgery, I do hope some of them who are still online here with more than 5 or 10 years since their GK treatment or surgery will write back to you I do not mean to scare you, but I do suggest you get other independent second and/or third medical opinions from major brain tumor centers where the doctors treat hundreds of brain tumor patients each year of all types and grades with surgery first, so they know exactly what it is before they radiate your precious remaining brain cells, because any radation therapy has to go through healthy brain tissue to get to the tumor area. And some brain tumor patients need anti seizure drugs for the rest of their life or hormone supplements if their pituitary gland is damaged by radiation.
Please read my list of 28 questions to ask your medical team and discuss with your significant others, with each second opinion doctor visit you will learn more about your specific condition and possible drug treatment options for some without surgery or radiation therapy. Currently mifepristone is being made in other countries for birth control, like China and India where it is very popular and very cheap, here in the US the brand names Mifeprex, Corlux and now Korlyn, are very expensive and only used for oral contraception and Cushing's disease after testing it for safety for more than ten years.
Please send for educational handbooks of brain tumor treatment from the major not-for-profit bt support organizations in Boston, NYC, Chicago and San Francisco, it only takes a few minutes to google, call or email all of them for their free literature and then you and your family will have well organized printed material to read and plan together at your own pace and determine the best way for you to proceed in the beginning, or if you have a recurrence like I did. I was able to get my own FDA approved investigational clinical trial after I volunteered for a NCI clinical trial meningioma drug therapy instead of either standard surgery or radiation. I'm still fully alive, fully human and dancing and singing, reading and writing, walking and talking 29years after my first surgical removal and I have postponed the standard tumor board recommended brain radiation therapy for more than 20 and I had my gradual slow growing reccurence safely debulked 15 years ago. I'vebeen on the drug Mifepristone for a total of 12 years with no noticeable permanent side effects from the safe non toxic drug.
GBYAY Anne McGinnis Breen, a 29year survivor of a grade 2 meningioma which has regrown a bit each time after two surgeries couldn't get every single bad tumor cell from behind my left eyeball, but it has not progressed to a higher grade tumor as some other patients tumors do, especially after brain radiation therapy. See my ponytail bouncing and my smiley face winking at you? &;>)
Hope is a free gift I want everyone to have at each step of their journey in life.
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"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
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Keep your faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!
