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Brain tumor and the diagnosis procedures

Anngillfl
Posts: 1
Joined: Apr 2016

Hello my 20 year old niece is currently in Yale brain tumor center. Tuesday she had her first appointment wiith the oncology neuolologist and was immediately admitted and has since learned nothing more in regards to prognosis, treatment or what the discovery process is. We are frustrated and confused. There is a team of 3 doctors who all have different opinions. They schedule tests and we think finally they are going to get answers and tell us what's going on, then they change their minds. Is this normal? Does my niece have the right to choose what course of action they take? They won't say cancer but one moment they are doing surgery and the next they aren't. This is all new for both my niece and my sister, what information exactly are they in entitled too? How do you trust a team that can't even agree on how to diagnose the type of tumor? Any insight into the normal course of action would be appreciated.  

lelling
Posts: 1
Joined: Mar 2016

I have been in this stage for 6 weeks.  I had 2 mri's and a CT scan.  I was told by my primary I might have surgery.  My neurosurgeon said surgery to remove the tumor was not possible.  My primary said I may have surgery to obtain a biopsy for the tumor in another portion of the brain. My neurosurgeon said that the procedure was probably unlikely, but it was up to the oncologist.  My oncologist said she was going to treat with radiation.  All providers agreed I had a brain cell glioma.  However my primary and neurosurgeion thought it was cancerous and I had 1.5-2 years because the tumor was growing causing symptoms.  They said they thought it was benign but for whatever reason became malignant.  The oncologist thinks it is benign because if it was cancerous it would have grown faster since the onset of symptoms.  She thinks the tumor was there for a long time.  However, my symptoms are increasing.  I am definitely going for a second opinion.

 

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