Expert: Claes-Gustaf Nordquist, M.D. - 9/18/2007

Question
QUESTION: WE UNFORTUNATELY ARE TRUSTING THE NEUROPATHOLOGIST AND TEAM THATS SAYS IT'S A III. WITH THAT WHEN SHOULD WE BE CONCERNED THAT SHE WILL START HAVING SYMPTOMS. MONTHS, YEARS. IT'S VERY DIFFICULT BECAUSE WE KNOW THERE IS THIS LARGE MASS IN HER HEAD AND SINCE DIAGNOSIS SHE HAS BEEN FINE. SHE IS GOING TO BE 43 THIS MONTH IS IN GREAT SHAPE (OTHER THAN THE TUMOR),DIVORCED AND HAS 4 CHILDREN THE YOUNGEST BEING 8. HER SISTER AND I ARE TRYING TO MAKE SURE ANY FINANCIAL BURDENS SHE HAS ARE LESSENED. WE DON'T KNOW IF WE SHOULD ENCOURAGE HER TO MAKE CHANGES IN HER LIFESTYLE GIVEN THE CIRCUMSTANCES. SHE IS THE SOLE FINANCIAL SUPPORTER FOR THESE CHILDREN AND HAS A HEFTY MORTGAGE. WE ARE ALSO WONDERING IF SHE NEEDS TO DO ANYTHING ELSE. PLEASE LET ME KNOW IF SHE WILL REMAIN ASYMPTOMATIC OR IS THAT UNREALISTIC.
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Do you feel it is only a matter of time before she has symptoms. My concern is the chemo. If it's a II vs a III then should she still get chemo. I also have read about survival rates on grades II thru IV. Not much is said about grades II and III. I know the prognosis is not got good for IV glioblastoma but how about diffuse if it's a II. Could you please sum up the outlook for a grade II and III. I have read a lot of responses and I appreciate your straight forward approach with regards to the truth.

Thank You
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MY GOOD FRIEND RECENTLY HAD A CRANIOTOMY TO REMOVE A FRONTOTEMPORAL 5.6CM ASTROCYTOMA.ABOUT 50% WAS REMOVED DURING THE RESECTION. IT WAS PERFORMED AT THE UNIVERSITY OF PENNSYLVANIA. THE PATHOLOGY REPORT STATED IT WAS A WHO GRADE II. TREATMENT WAS MORE SURGERY TO REMOVE AN ADDITIONAL 25% FOLLOWED BY RADIATION. WE TOOK HER TO MASS GENERAL FOR A CONSULT FOR PROTON BEAM AND THEIR PATHOLOGIST STATED IT WAS A GRADE III. THEY FELT SURGERY WAS TO RISKY AND RECOMMEND RADIATION FOLLOWED BY TEMODAR. WE HAVE TOLD BOTH HOSPITALS ABOUT THE DIFFERENCE OF OPINION AND BOTH FEEL THEY ARE CORRECT. WE HAVE ALSO CONSULTED ANOTHER HOSPITAL HOWEVER, WE HAVE BEEN TOLD THAT THE PATHOLOGIST AT MASS GENERAL IS WORLD RENOWNED AND MORE THAN LIKELY CORRECT. SHE HAD NO SYMPTOMS PRIOR TO SURGERY AND STILL HAS NO DEFICITS. SHE WAS DIAGNOSED WITH THIS 4 YRS AGO. I FIND IT SO UNUSUAL AFTER ALL THE RESEARCH I'VE DONE THAT THEY WAITED 4 YRS BEFORE DOING ANYTHING. WE WANT TO MAKE THE RIGHT CHOICE AND KEEP HER THE WAY SHE IS NOW.WHICH IS NOT IMPAIRED AT ALL. COULD YOU PLEASE SHED SOME LIGHT ON THIS MOST CONFUSING SCENARIO. THANK YOU
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Many brain tumours are notoriously difficult to grade, so I'm really not that surprised by any difference in grade.  However if nothing much happened during 4 years a grade II is actually more likely. However it IS possible for a malignant brain tumour to increase in grade and become more malignant over time - at least such cases have been reported but with grade uncertainties we can perhaps not be sure. So this IS uncertain! I would suggest radiation therapy & chemo therapy but again this is an uncertain field!

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You can roughly divide up these tumours in 2 groups: Grade I & II are slowly growing and you can live a rather long time with them. Grade III & IV are fast growing. Grade IV is worst but also III is bad. This is a simplified description but it gives you some idea of what I mean. The problem here is that we are not quite sure of if it is a II or III. So a II will often live many years after treatment. A III will probably not. A grade IV almost certainly not! But the uncertainty in grading here makes it hard to be more precise!


ANSWER: I think it unfortunately is only a matter of time until she has symptoms. But how long is impossible to say! How big is her remaining tumour? You went to Boston for proton beam therapy right? That is only possible if the remaining tumour is not too big (roughly around an inch or so). If of that size both proton beams and "GammaKnife" radiation are possible! If too big however both these methods are out of the question. So if small enough her remaining tumour could be a candidate for either of these methods. But if too big only conventional radiation and chemo therapy remain unfortunately. These are the realities of her situation, things no one can change at present. I can not promise a cure with either unconventional method BUT I CERTAINLY can not do it either with the conventional therapies. I'm sorry I have nothing better to tell you!

Tumours like patients are individuals. It can be anything from months to a few years. Statistics is not of much help in a single case like this. It is meant for use with vast numbers.


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QUESTION: I had sent this awhile ago and her treatment went well, she had 33 proton beam treatments with temodar in February and March and has been taking the temodar for 5 days a month since. My question is every MRI has been stable or has indicated shrinkage yet I'm seeing some serious personality changes. During the treatment she was scared and emotional(who wouldn't be) but now 9 months after surgery and 6 months post proton, a new person has arrived, and not a good one. She has some SERIOUS narcissistic tenancies is emotionally unstable, and has been fabricating stories that never took place. There is also no reasoning with her. If it weren't for her illness she would have lost many friends. Is it possible for the tumor or treatment to effect one's personality so severely? It would make it much easier to deal with her if it we had some insight on this matter.

Answer
I have looked back to your previous questions and from them I get the information that her tumor was at least to some extent associated with her frontal brain lobes. That is significant since tumors AND surgery (probably also proton beams) there can indeed cause those personality changes you have described. Also one of her temporal lobes seems to be involved. Also in that area there may be psychological effects of tumors and treatments. So I'm not surprised by your description. You can think of it as a kind of lobotomy, the horror story treatment from older days. Unfortunately there is no treatment for it!