Connect
Meningioma: Getting ready for radiation, any tips or advice?
My grade 2 meningioma, "Bengio") was surgically removed April of 2023. At my recent MRI, it showed that it is growing back. Since it isn't too big yet, they want to do radiation to stop it's growth. Anyone else experience this? If so, is there any advice or tips you can give me? I will have travel 2 1/2 hours for treatment. Thanks in advance!
Like
Helpful
HugInterested in more discussions like this? Go to the Brain Tumor Support Group.
Connect
Quite often, depending on the area of the brain, they do have to leave “a cuff” of tissue around arteries or nerves. Even in the patients that state they had “complete excision” of the tumor they can regrow. The surgeons will always say no guarantee. I was told it’s a diagnosis that you will live with all your life, though many people thrive with full lives.
-
Like -
Helpful -
Hug
1 Reaction@lawendy I am a candidate for SRS to treat a small meningioma near my left optic nerve. Were your radiation treatments successful? Do you have any long-term side effects?
@vernicek Hi! So far I have had a good response. The tumor has been stable and I did not have any symptoms. I had minor hair loss and really only had minor headaches after the treatment but that went away. I am glad I did it. It was more emotionally trying than physical. If you are having any growth and don’t want surgery try it. Hopefully it works for you and continues to work for me. Good luck🙏
-
Like -
Helpful -
Hug
1 Reaction@lawendy Thank you! Your response is encouraging and I’m happy to hear you are doing well. My doctor is suggesting 30 radiation treatments spread over six weeks. How did your doctor determine you only needed five?
@vernicek: My radiation oncologist vacillated between a one week session of 5 treatments or 30 treatments spread out over six weeks. He seemed to be leaning toward the latter. Then said he was going to consult with a neuro doctor at UCSF. I never followed up on what opinion the neuro oncologist received because I decided to have a craniotomy instead. Perhaps that would be a good question to ask your neurosurgeon on "My Health" on-line: why he suggested 30 treatments instead of 5. Is there a benefit, in your personal situation, as to why he chose one over the other.
I’ve seen my neurosurgeon twice and we are in the process of discussing options. I have a list of questions for the neuro-ophthalmologist and radiologist, and my friend, who is a doctor, is going with me. I want to know if 5 doses is stronger than 30. If so, I have to have the smallest individual dose due to the meningioma being so close to my optic nerve. It will probably be 30. This tumor has stopped me in my tracks! I have a list of travel plans and things I want to do but can’t plan anything. When is your next MRI?
@vernicek Hi again, I wish I had a good answer for you as each of us have very specific individual situations. My meningioma is stage 1 small enough to do the radiation and I was and still am symptom free. I consulted with 3 neuro surgeons at UCLA and Cedars top surgeons that felt 5 was the standard amount for my case. I did a lot of research and looked into cyberknife and learned why my type was best for me. Do you have symptoms and how large is your friend in your head. Mine is close to my optic nerve and so I was not a candidate for gamma knife which is a stronger dose and too risky for that area close to the optic nerve. I have had two MRIs since treatment and so far so good. My next one is in March. Hope it stays stable.