One patient with glioblastoma still alive nine years later
by Fargo on Sat Nov 24, 2012 07:54 PM
I am looking for a bit of advice regarding my sis's above diagnosis. A little bit of background:
My sis had colon cancer 11 years ago. Recently, on an emergency room visit, it was discovered in her brain and lung. Emergency brain surgery was performed to remove a tumor and bleeding from the back of her brian (base of the neck. Neurosurgeon stated all went well and foresaw few complications. Well, mentally, she is now pretty much incapacitated and I am POA for health as has no other family. They (the world renowned med center) cannot give me an answer as to why her mental capacity is so vastly diminished. The oncologist are also baffled as the part of the brain that runs reasoning, decision making, behavior, etc is nowhere near the surgery.
The med center now wants her discharged post haste to a "rehad center" (i.e. nursing home) where she is get therapy for her brain and travel daily to the hospital for full brain radiation. Prognosis for recovery from the cancer (recognize there is no "cure" per se; it is palative with a year to live being a good prognosis). We (her siblings) do not feel we are receiving any clear information as it appears that all related MD's (neuro, rehab, oncology) all operate in their own silos and I see no evidence of a holistic approach.
With that, here are a few questions:
We want a 2nd opinion on the brain issue and want her transferred to another medical center. Does anyone have experience in the "mechanics" of this process? If so, can you share your experiences?
Secondly, any opinions of the ethical question of forcing radiation and subsequent chemotherapy on my sis IF (and it is a big one) does not recover her previous sharp mental state and may need to live her life in a nursing home (Sad to say, there is not the familial bodies to take care of her at home as both of us need to work and travel weekly for our jobs)?
Thanking you in advance....
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