Expert: Claes-Gustaf Nordquist, M.D. - 3/6/2009

Question
QUESTION: My sister was diagnosed with this October '07.  Seizures were the sign that led to the diagnosis.  The tumor is on the left side. The surgeon was concerned about surgery due to the tumors position near or on the motor function portion of brain.
She has been treated with a course of radiation and Temador for close to two years. (last dose Oct '08)
Has had a significant shrink in the tumor and "hot spot" as a result of the treatments.  Her last MRI showed status quo.  I would like to know what this type of tumor behavior is in getting larger and is it common to use a different chemo drug, how long when all treatments seem to be ineffective does it become fatal, what will she experience?  Do all patients go into coma before death?
I've been told to expect up to five years for her survival.  Is there anything out there that I might hang hope on?
What about radio waves?
I'm just so desperate to know as much as possible about the details of the course of this cancer.
Thank you
Jann Buran

ANSWER: Do you have any information of the grade of her tumor? I ask because the prognosis of a brain tumor is closely associated with its grade (= degree of malignancy). Most malignant brain tumors at present are fatal eventually. Survival time is closely related to grade. Yes most brain tumor patients end up in a coma before death. Epileptic seizures are not uncommon symptoms either. The possibilities of different chemotherapy drugs are rather limited due to the so called blood-brain barrier. How big is her tumor now, since that too limits her possibilities? Treatment options for brain tumors have not changed much over the last 30 years or so, surgery, radiation therapy and chemotherapy are the options. "Unconventional radiation therapy" like the GammaKnife and proton beams existed already then. The CyberKnife has been added but is not much different.  Radio frequency ablation and microwaves do exist but are of limited use for brain tumors.


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

QUESTION: Her tumor is a grade 3.
The size of the tumor has significantly shrunk with the hot spot being about the size of a pea-that was as of the last MRI in Jan 09.  She is scheduled for her next MRI 3/20/09.
She was told the GammaKnife/CyberKnife was not a treatment possibility.

ANSWER: I see. Well in many cases the GammaKnife/CyberKnife is not an option, but in some it is. Here it seems it is not. Here the tumor was probably too big to begin with. A malignant tumor can hardly be bigger than an inch in size, probably less, for any successful treatment with this method to be possible.



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

QUESTION: QUESTION: The tumor "hotspot" on the 1st MRI was about the size of a walnut and she was told the tumor had been there for a long time.
I would like to know since treatment has shrunk it what is the timeline of re-growth.  Do they usually grow at a faster pace after treatment or can we expect the same rate of growth as before diagnosis?

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Answer   So it was probably too large. Well that is uncertain. It can regrow at the same speed OR it can do it faster. But you must understand that we are talking of so called "doubling time". That is the time it takes for a tumor to grow to its double size. Even if that is constant it means that it takes just as long to grow from 1 inch to 2 inches in size as it did from ½ an inch to 1 inch! So it will look as if it grows faster over time.

Do you agree with the 3-5 year survival prognosis.  Is it common to live longer 10 or 20 years due to the extent of the tumors shrinkage?
The time line from when we assume the tumor began (daily headaches) to diagnosis of walnut size hotspot was about 10 to 13 years.  So conceivably it could take that same amount of time to grow back to the walnut size.  
Also, do the tentacles retreat from weaving in brain during radiation/chemo?
Generally how long when the symptoms begin returning-ie headaches/balance issues/seizures-she is on anti seizure meds-til death.  Does severe disability occur before coma, is it possible to need a long term care placement?  
I just want to be mentally and physically prepared for whatever may occur and I want to make sure my life and family are all prepared to do what it takes.
Thank you so much-this is a great service  

Answer
Honestly I think 3 to 5 years of survival time is somewhat optimistic. I would have said 2 to 4 years MAYBE! No such a long time is not realistic. When a brain tumor starts giving head aches the tumor is already rather far gone. It is therefore not realistic to assume that her earliest head aches had anything to do with this. When her head aches started to have anything to do with it I can not say. The time line of many years starts with the very first malignant tumor cell (NO symptoms at all!). So based on the available information it is not possible to construct any time line of any accuracy. The whole tumor retreats during radiation & chemotherapy. It is impossible to predict the return time of symptoms with any accuracy. Too many individual factors. Yes she will become more & more confused, may have epileptic fits. Will sleep more and more, eventually all the time then drift into a coma and then pass away. She will be severely disabled so you should if possible contact hospice. I'm sorry I have nothing better to tell you!

Thanks! She may also have stroke like symptoms.