← Return to Meningioma: Anyone else? I'm frightened
DiscussionMeningioma: Anyone else? I'm frightened
Brain Tumor | Last Active: 3 hours ago | Replies (339)Comment receiving replies
Replies to "Hi @mkoch and @gammaqueen, I hope you can help me with some insights. I had an..."
ninha: Wow, if the neuro oncologist, whose job it is to oversee radiation of both benign and malignant brain tumors, recommends that you go with surgery, I'd really listen to that. I just read a book published in 2024, written by a neurosurgeon, who states that 2.5 cm. is about as big as you want to go to have the radiation. ( My neurologist said 3 cm. but he's not the expert in the field of neurosurgery.) I'd have to go back and reread the chapter as to why radiation is less effective once the meningioma grows past a certain threshold. I was also told, by a neuro oncologist , that he would schedule the radiation 5 days in a row, Mon.-Fri., and I'd be done. The reason I did not choose stereotactic radiation was as follows per what I was told by the neuro-oncologist when I asked for post radiation symptoms/problems:
**Whatever symptoms you are already experiencing the radiation won't negate those. The purpose of the radiation is to stop the growth/possibly shrink the meningioma but I was told once a particular symptom presented itself that would not go away because of the radiation. But, removing the meningioma would resolve my symptoms.
**The main reason I did not want to have radiation is b/c the neuro doc told me there was a
5 - 10% chance that the radiation would cause necrosis-meaning some brain tissue dies and becomes necrotic. Then you would either have to have surgery to try and remove the dead tissue or you would also have to go on steroids long term. I saw what steroids did to my father when he was on them long term for lung cancer and I didn't want to go that direction, take that chance of being in the 5-10% range of developing necrosis. (In all fairness, another neurosurgeon quoted the necrotic rate at 2-3%)
**As you know, I did have a full on craniotomy and had my entire 2.7 centimeter removed. I was only on steroids for a month b/c any brain surgery will cause swelling and that is the post surgical standard. I have posted before the craniotomy was NOT the nightmare I had envisioned. I am so glad it is OUT of there, and not still sitting in my brain shriveled up, not growing, but still there which would be the case had I had the radiation. I was 71 when I had the craniotomy and my benign tumor, a.k.a. meningioma, was in my cavernous sinus, a difficult location that both my neurologist and the neuro radiologist said they couldn't imagine a neurosurgeon attempting to remove it. The neuro oncologist you consulted is basing his recommendation on your age and the location of your meningioma. Count yourself lucky that he thinks it's in an accessible location. Count yourself lucky that you're young and healthy and will probably sail through brain surgery, as I did. (Well, I did have double vision for 3 months but that was only b/c the growth was 1/16th of an inch from my optic nerve and the nerve was inflammed from the surgery, not cut, therefore it healed on its own in 3 months.) I would keep in mind that someone posted a few weeks back that 20+ years ago they had radiation for a meningioma and now they have been diagnosed with brain cancer. That person was wondering if there was a correlation between the radiation they received years ago and their current brain cancer diagnosis. That is not far fetched. I have read multiple times about having radiation for a given medical problem and the risk of cancer because of it in the future. Of course, I am sure the risk is dose dependent to a certain extent. I will close by repeating what I stated at the beginning, that is if the neuro doc whose job it is to oversee radiation of meningiomas but suggests surgery would be the best option for you, thereby handing your care over to a neurosurgeon, I would trust his judgement and at the very least consult with a neurosurgeon. I'm sorry you're having to go through this decision making process. I found it stressful.