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Metastatic hemangio-pericytoma brain tumors

bt1943
Posts: 6
Joined: May 2012

My 40 year old son had brain surgery in June, 2011.
He had three hemangio-pericytoma tumors. They removed
two and he had 35 radiation treatments to the third.
In April, 2012 he started having pain and thought it was
his appendix........turns out the tumors had moved into the
liver/stomach area. He is now taking chemo. Has anyone heard
of these tumors moving to other parts of the body?

lrspillman
Posts: 1
Joined: May 2013

 

Yes, it is possible for these tumors to travel to other parts of the body but normally this beast does not go else where. My wife  had her first surgery for a fist sized Hemangiopericytoma in 2005 and all was well until 3 more of these monsters developed in the same area in 2009 and removed via Gamma Knife. I questioned the Radiation Oncologist and the Neurosurgeon about the migration and was told that there is only about 1 in a million chances that they would travel elsewhere. I suggested she get a full body scan every year but was not listened to. In 2012 they had moved from the left frontal lobe to the center of the brain halves and were treated via Gamma Knife again. I suggested several times that a PET scan was in order but both told us not to worry as the risk was extremely low. Now in 2013 spots were found on her liver a week ago and biopsies were done and it was found that her liver is riddled with pericytomas. She has now had a PET scan but the results of that test are not in yet. We suspect that they have invaded the blood stream and we are not very optimistic that they have not gone to other organs of the body. Bottom line, don’t be led by the experts blindly. Demand care if you think there is any chance some one might be wrong. As results of 2 gross errors my wife cannot talk, from a boo boo in 2009 and now she faces whole body tumors.

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