Hello @jcorcoran , I'm sorry to hear your diagnosis. A tumor in the brain is always a shock that transforms life forever (for ourself and for our familly) As you, my adult children take it very hardly and I feel responsible in spite of myself to make them live this sad experience at a young age. I myself have a slightly different brain tumor, located in the 3rd ventricle (a little to the right side) and sinking towards the brainstem. Inoperable (without causing cognitive damage).

I would like to answer you because I am touched by your questions, hoping that it will help. My own experience proves to me that one is right to take care of one's medical file. You do well to think about the questions to ask doctors. This will allow you to better control the situation and make the right decisions for yourself. The difficulty with brain tumors is that they are often atypical, unique, different from those of others, even with the same diagnostics. Ask your doctor if he has ever treated a tumor like yours. In any case, ask to have the opinion of a second neurologist, even if you have the best. This is a perfectly justified and intelligent question that he should encourage.

For my part, as my tumor is atypical, I met many oncologists. In general, everyone is specialized in his field and will propose it to you. The surgeon will want to cut the tumor, the oncologist will suggest chemotherapy, and the radiation oncologist will want to radiate your brain. This is the standard protocol, the standard, the smallest multiple common, the easiest way. The question is: is this the best way for you? Are there other more appropriate treatments for your specific case?

Personally, I keep in mind that brain cancer is still incurable. Medicine did not find the solution. The only thing doctors do is prolong life. We must therefore ensure the state in which it extends us. Do not hesitate to ask him about the side effects of the treatments.

For example, in my case (which is a little different from yours), I asked many questions (recommended by a doctor I trust) to the radiation oncologist. Rays burn brain cells upstream and downstream of the tumor. You must ask the radiation oncologist what will be the path of the rays and ask what brain structure will be affected. For example, in my case, the rays, after having burned the tumor, necessarily passed through one of the hippocampus. The hippocampus is responsible for the memory. I asked if the damage could be permanent? The answer was yes! I refused this treatment (today, as my chemotherapy, the only treatment I receive, is destroying my tumor, I am happy with this decision and proud of me).

There is a lot of research. Ask questions about other possible treatments that are less invasive and safer. If your doctor does not care about it: change your doctor! Hoping we live long enough to see our grandchildren grow up and to see the day when we will have the medical technology that heals.

I wish you to live very very old.

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