It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
undiagnosed
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Permalink Reply by Kim Repsha on -
I went undiagnosed (or should I say misdiagnosed) for 3 years. A year of which was after a brain biopsy!! Pathology was sent to UMDNJ, Johns Hopkins, and Sloan Kettering. Nothing!! Finally a doctor at Cornell in NY diagnosed my brain tumor. I too still have a small amount of the tumor in my brain because it was too risky to remove it all and radiation didn't kill it. And they cant tell me whether it will grow back or change either, and I too am on wait and see and I go every 3 months for MRI's . I am trying to get used to the new "normal!" I can't feel the right side of my face, my right side doesn't work well, and I am unbalanced and uncoordinated! I am only 42. Three years ago I was doing backflips in the grass with my cheerleading team and now I can't walk a straight line! Talk about frustrated!!
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Permalink Reply by John on -
Sorry to hear about your troubles. Seems very frustrating. I had a needle biopsy performed this past February and it seems to have turned out to be undiagnosable. It was initially diagnosed as a hamartoma, but subsequent opinions have refuted it. Had the original tissue samples retested by another pathologist who came to the same undiagnosable conclusion. So now I have an upcoming craniotomy to remove the lesion and to hopefully provide enough of a sample to determine what the lesion might be. I have fears too that it still might be undiagnosable even after this procedure. The unknown can be unsettling. It would be nice to know either way and to be able to just move forward and deal with whatever that may come rather than being stuck in a limbo.
As Rebecca suggested, I would try to find other doctors around the country if you can to help in determining what it might be.
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Permalink Reply by Dorothy Hall on -
Mine was also undiagnosed for years. My original biopsy was done at a local hospital, and the pathologist could not diagnosis it there. It was sent to Mayo and to Armed Forces Institute of Pathology, which is supposed to be one of the top places - again no diagnosis. Then I ended up with a new neurosurgeon at H Lee Moffitt Cancer Center, and had the entire lesion removed. I was originally told post op that it was a ganglioglioma, but then was told it was not, that path did not confirm this. Again it was sent everywhere, including to the head neuropathologist at Johns Hopkins who even forwarded it on to his contacts. Final word was atypical glial cells, no atypical ganglial cells, no tumor markers. So, either low grade glioma or gliosis, who knows. End result is the same, I had a large craniotomy and they removed a large portion of my right temporal lobe. Things will never be the same and I have my MRI's regularly to check for regrowth. Who knows what it was. but at least it is gone. My surgeon was suspecting a low grade astro at first so I wanted it out before it grew up into something worse!
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Permalink Reply by Andrea on
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Wow and I felt frustrated! I thought that having a biopsy was the only necessary thing to get a diagnosis! I have a tumour on my head not brain, but is right below all nerves so Dr recommended to not get a biopsy as it hasnt grew or change since They find it 9 years ago, but a month ago I started to feel tickles on the right side of my face so Dr ordered another MRI, next Saturday I'll get results, so anyway, for what I can read from you guys it's just the beginning I still have no diagnosis like you, I'm glad I found this site with stories like yours.
Andrea from Mexico
Dorothy Hall said:Mine was also undiagnosed for years. My original biopsy was done at a local hospital, and the pathologist could not diagnosis it there. It was sent to Mayo and to Armed Forces Institute of Pathology, which is supposed to be one of the top places - again no diagnosis. Then I ended up with a new neurosurgeon at H Lee Moffitt Cancer Center, and had the entire lesion removed. I was originally told post op that it was a ganglioglioma, but then was told it was not, that path did not confirm this. Again it was sent everywhere, including to the head neuropathologist at Johns Hopkins who even forwarded it on to his contacts. Final word was atypical glial cells, no atypical ganglial cells, no tumor markers. So, either low grade glioma or gliosis, who knows. End result is the same, I had a large craniotomy and they removed a large portion of my right temporal lobe. Things will never be the same and I have my MRI's regularly to check for regrowth. Who knows what it was. but at least it is gone. My surgeon was suspecting a low grade astro at first so I wanted it out before it grew up into something worse!
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Permalink Reply by Ann Manzi on -
Stephanie, Not knowing is the scariest part of this journey. Benign may not take your life but it definitely changes it. You need to find drs. that support you and keep in the know. Keep asking questions and researching on your own. I have had seizures, a craniotomy, and a month of fractionated stereostatic radiation. I don't have a lot of options; but faith sustains me through the rough spots. With the brain, there isn't always answers, no two tumors or people are the same. Having a benign tumor can devistate your lifestyle; but remember change can be good. Look at the National Brain Tumor site, very informative and always raising funds for research. I am volunteering and have met wonderful people who help support each other. Do take care and be your best advocate. ann
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Permalink Reply by Stephanie on -
thank you so much for your responses it is helpful to know I am not the only one with no diagnosis , this september will be 2 years since they removed the tumor and still no closer to diagnosis im coming to terms with it not being diagnosed although never will I feel completely ok with that, but I just have to keep getting the MRIs and hope whatever it is doesnt grow back , I just went through another round of blood test testing me again for everything they already tested me for so we will see if any results came back different this time. I wish there was still more of the tumor left to send out to other places for different opinions but there isnt and what is left inside my brain is to close to remove without risky serious injury or side effects :/ if any of you ever find out what yours are please i would love to know the findings to see if maybe its something i can be tested for it is hard to find people in my situation so if anyone of you would like to talk my email is mosa77@optonline.net and I have a facebook which I think you can look up by my email or my name Stephanie Brown I would love to get to know you and about your journeys more
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