Did Your Brain Cancer Start As A Tumor?

I have been diagnosed with a Low grade glioma in the right mesial temporal lobe of the hippocampus.

I wanted a second opinion from the Tulsa Cancer Center, but they said that they will not see me unless I have a slide from a biopsy, and a diagnosis. I have been told I cannot have a biopsy due to the fact that my tumor is in the very center of my brain. What do I do? Has anyone else experienced this?

Shannon

I have never heard of this but then again I don't know anything about this place either. Maybe they don't keep surgeons on staff and aren't equipped to do biopsies, etc. Where do you live in OK? I would strongly suggest that you head straight for MD Anderson in Houston. They are the number one brain tumor center in the nation. They will tell you everything (and more) that you will need to know about your tumor just by looking at your scans. I live rural west Michigan and we went straight to U of M in Ann Arbor when we found out about my husband's tumor. They are also rated in the top 10 for brain cancer.

Good luck and please let us know if you need more help. There are other brain tumor sites that are extremely helpful - go to braintumor dot org (hopefully you know what I mean by that - cancer compass will not allow any URL listings, e-mail addresses, etc.)

Mary
w/o steve, 33
aaIII in brain stem
chemo/rads
60% reduct

Hi Mary,

Thank you for your note of encouragement and hope. I am so sorry about your husband. If I read the response correctly, he lost the battle.

I live in Casper, WY. I will be near Tulsa for my daughters’ graduation on May 12. I have an excellent neurologist, but I do not know much about my neurosurgeon if it comes to that. I have a tumor buried in the center of my brain. It cannot be safely biopsied without damaging vital parts of my brain. I was told that if it came to that, they would just open my brain all the way up, and biopsy the tissue and remove the tumor all at once.

I will check into the Houston thing, and I know what you were trying to tell me. May God Bless you and keep you.

Shannon

I have a brain tumor. If you would like to help me with my rising medical costs, please send your tax-deductible donation to Hilltop National Bank, PO Box 2680, Casper, WY, 82602. The smallest amount can help. The name of the account is the Shannon G. Medical fund. The account number is: 8199973. Thank you for your time and consideration.

look for a brain tumor center - not just a cancer center.

There is a list of them at www.virtualtrials.com

Hello my name is katie.

my mom have a grade 4 GBM she went to Cedar Saini hospital in California for a trial. She was not approved for the trial but they did surgery. At that point before the surgery she was given 3 to 6 months to live. They did operate and said she was 90% cancer free. Then the chemo they put her on stopped working because after so long each chemo she tries stops working. So they puther on a new chemo thats was either an introvenus or pill form but they chose the pill form because she was not ok'ed by her cancer doctor for the introvenus form due to the type of cancer and how she would react to it. Try Cdar Saini and see how it goes... My uncle is doing cancer reasearch and her looks at the trials and he recomends that hospital.

Katie

I have a 21 year old son that had a tumor removed in July, 2004 at St. John's (left temporal lobe) by a jerk - Dr. David Malone at St. John's, here in Tulsa. He then found another one in the right frontal lobe in November, 2005 and St. John's told him that since he only had medicaid they didn't think they could find a surgeon to remove the second one for "20 cents on the dollar"! We never graced their doorstep again. Not only did we find a surgeon, but we found an angel - Dr. Douglas Koontz at St. Francis. He performed the surgery - sent the pathology to John's Hopkins and unfortunately we found that his tumors are classified as Mesenchymal Chondrosarcoma, one of the rarest forms of cancer known. I would be happy to get you in to see him - he is an angel. He has been by Damion's side through radiation and even after. Please let me know if I can help you. Dr. Koontz is a wonderful neurosurgeon and took my son in when nobody else would.

Diane