Expert: Claes-Gustaf Nordquist, M.D. - 8/6/2009

Question
QUESTION: Hello,
My husband was diagnosed with an oligo in 1996 at 31 years of age after presenting with a seizure.  Since his diagnosis, he has had 3 debulking procedures (tumor cannot be completely removed) and radiation in 2000 after tumor growth.  18 months ago he presented with speech difficulty and right hand/side weakness.  MRI's did not show any significant change in the tumor but my husband's symptoms were worsening.

He was eventually admitted to hospital as his seizures were becoming uncontrolled and his symptoms were worsening.  He was referred to an Oncologist and was advised to undergo Chemo PCV regime.  He is now in the his 2nd cycle and his seizures are undercontrol but deficit symptoms are still the same.

I need to know for our future planning and my children's future how long my husband has left to live.  Our specialist don't like to "predict" and seem to avoid the question.  He is now 45 years old and has been dealing with this tumor for 14 years.  Are we at the stage of "bidding time"with this PCV?  Should I expect him to be around for another 10 years.

I am strong and have dealt with this horrible disease for a long time.  I need to know the truth.

Kind Regards Martina

ANSWER: It is actually quite hard to give you any precise prediction on this matter. His future is definitely not bright with this tumour disease and it will probably eventually kill him but exactly how long that will take - even more hard to tell since we do not know the response to his last treatment - is impossible to tell. And he has actually lived rather long already with this diagnosis. Personally I doubt that he has 10 more years, but I may be wrong. Oncology is progressing all the time and its results do improve. So matters are rather unpredictable since our experience change with time faster and faster. AND both tumours and patients are individuals NOT identical copies/clones. This is as close as I can come unfortunately!


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

QUESTION: Thank you for your prompt reply.  Why would my husbands MRI's not show any significant changes of the past 18 months, but his physical symptoms were worsening?  The neurosurgeon has said there is no defined line of tumor to remove but it is diffusely through his motor strip.  Would his tumor of changed in malignancy from a Grade 2 in 1998 (his last operation) until now?  Thank you for your time

Answer
If it grows very diffusely and it is difficult to put a border to his tumour it is actually quite difficult to define the the size of the tumour. So there may be growth that is not clearly evident. It may also have changed malignancy to a higher number (for example to a 3) of grade. That is not uncommon and it would speed up its growth.