Expert: Claes-Gustaf Nordquist, M.D. - 1/11/2009

Question
QUESTION: This past year has been a nightmare as well as a puzzle where the pieces just do not fit.  Having a family member diagnosed with GBM stage IV it became apperant that this person did quickly become a different person in terms that they no longer are able to work, drive and need assistance with the daily needs of help with showering and cooking.  The energy just seemed to be drained so quickly.  One year later and multiple opinions from Drs, ( to confirm the diagnosis and a biopsy that came back with only deep tissue), it puzzles me to understand how this person has not clinically suffered the symptoms that I have read.  Besides being tired, the face and feet and have swelled from 2mg of decadron that they are on, and sure they do not engage in the activities they used to.  Eating is just during meal time and conversation is whey they want to talk. But, to hear this is a very aggresive disease and most die within a year and have amny other symptoms truly puzzles me.  The tumor is in the frontal lobes on both sides but could you explain because I do not understand why this person is doing so well, could everyone be wrong?  Do MRI's lie? We are so excited a new year is here and to know the hope that everyone has tossed out the door is still here and they are still around.  The only other symptom is about 12 hours asleep a day with they have been sleeping for months that long.  Please help me understand this.  Oh yes, they do get tired walking around so they use a wheelchair when leaving the house which is not often.

ANSWER: Am I to understand that the diagnosis has been set without any real biopsy? Please answer because you reply will determine my answer to a very large extent!



---------- FOLLOW-UP ----------

QUESTION: A biopsy was performed but unfortunatey the surgeon after numersou attempts could not obtain any "living"  tissue only "nercrosis".  I myself have been concerned and addressed this to the brain surgeon as well as the brain oncologist at the brain trauma center and they both assured the family that is was a blioblastoma multiforme stagee IV.  This past week this question was again addressed to the radiation oncologist as well as his  PCP and they assured me that it was a blioblastoma mutliforme.  Five specialist, so we have gone to others at others, in the brain field have assured our family that it is a glioblastoma multiforme.  One physician went as far as getting a medical disability and social security for them due to their illness.  If you are not puzzled by now, I am.  Two days earlier when the nurse came to the house they were a bit dehydrated, sleepy, and had no energy.  Yesterday, they went to the grocery store, of course in a wheel chair because they can not walk distance and out to eat.  Some days they will not remeber from minute to minute and the weight gain has been over 30 pounds, not to mention the constant urination during the night 8 times a night.  EVERY physican we saw said it is a glioblastoma in the shape of a butterfly.  Realistically do people survive without other compiications?  They are not on a lot of decadron to keep the swollening down so why are they not experiencing pain only a headache here and there?  I am going crazy while trying to help everyone.

Answer
Why are you writing "them" & "they" all the time but ONE (1) tumor? Are we not discussing ONE (1) patient? Well MRI scans do give indications if it is a GBM or not BUT the final diagnosis AND evaluation of grade IS and SHOULD be based on microscopical studies of biopsies (it is HARD & DIFFICULT even then) so mistakes here are NOT impossible! Head ache in late stages of brain tumors are usually not a big problem so the absence of that can not be used as a diagnostic criterion. Well without the support of a pathology diagnosis (except necrosis) the diagnosis here must to a large extent be regarded as an open question. Which means that survival time can not be predicted with any greater amount of accuracy.