my father has brain tumor for 5 years. he had operation three times the last one was 9 month ago in his last operation he lost his left eye and a small amount of tumor remain his sinus 4 month after operation he was under gammaknife radiation but his tumor grown again and he is going to lost the other eye. he is so upset what should we do? thank you so much in advance
I am so sorry that it appears your father has an aggressive tumor.
This is a patient forum so we are mostly support and can tell things from a patient point of view if we have had the same issue. The information you gave is tragic, but not so complete like the type of tumor (benign, malignant? and what kind?) so it is even hard to research on your behalf.
I can give you my standard advice that I give all - make sure you get copies of records such as MRIs and CTs - the actual films on CD as well as reports, and all labs and tests that you can get. It really helps for you to read and look at them as well as to have them for other opinions. It never hurts to get other opinions. If you had contacted me before your dad had radiation, I would have told you to research types of radiation as there are other options and some have more side effects than others - gamma knife is the oldest type out there and perhaps a consult for another type would have helped (or it may have been confusing!).
I can totally understand being upset. I know in my state, they have advanced programs for the blind where they have someone who is blind come teach you everything like eating, taking care of yourself and stuff like cooking or any hobbies you would have had before - and offer counseling at it represents a huge change in his life. I would contact social services and try to get some preparation ahead of time if possible as the mental issues should be addressed now if possible. My MIL went blind and she was totally depressed about it - and of course declined all the services (ugh) and declined rapidly for that decision. It can really make a difference for his future health.
I don't know your dad's normal outlook or prognosis, but please keep us posted on his progress. I hope he does well and I hope something I said helps.
thank you so much for your consideration. I write his last MRI result for you.
Brain MRI with and without contrast: MR study with multiplannar images in different pulse sequences: post op changes and large porencephaly in left temporal lobe is seen. there is an extra-axial mass in suprasellar region, left parasellar region with extension to frontal fossa. in post paramagnet injection the mass was enhanced. findings are compatible with residual or recurrent tumor highly suggestive of meningioma.
is there a way to see him again? thank you
I am only a layman. If he loses both eyes - and it sounds like the tumor is involving the area where the optic nerve sits as well (just from what I know as a pituitary patient), even if he kept an eye, the tumor would or could cut off the nerve.
I know they are making advances all the time - but I don't know of any (that is not what I look for) but I would look at different types of radiation if possible if he has not reached his maximum, and get other opinions.
We have someone here as well with a very aggressive meningioma so it can happen with a benign tumor. Have you pursued several opinions, clinical trials or larger hospitals?
did you receive pathology reports on the tumors that were removed? If it is a meningioma, it sounds like it is an aggressive grade 3 (possibly grade 2, but given the rate of growth I'm thinking grade 3).
If I were you, I would make sure that he has the pathology reports from all surgeries. If they were not done at the time, he can go back and request that they be biopsied. This will confirm what you are dealing with. I would then go ahead and consult other doctors. Be sure that the neurosurgeons and/or radiation oncologists specialize in skull-base tumors.
I forgot to mention, that if surgery is not an option and there is risk to vision in the good eye, you may want to look into different options other than gamma knife. Gamma knife can cause permanent damage to the optic nerve. You can look into IMRT, which is a fractionated radiation or proton beam therapy, which is safer for delicate structures in the brain.
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