Optic nerve sheath meningioma, worried about results 3 month checkup

hello,
here is what the doctor's note says: "left optic nerve meningioma s/p definitive radiation therapy to 50.4 Gy in 28 fractions completed 7/18/2025"
The machine was called Radixact....here is what their web page says:
"This is called intensity-modulated radiation therapy (IMRT). Integrated imaging and advanced dose-delivery capabilities enable your treatment team to create a more personalized treatment plan and confidently deliver the most precise dose of radiation, directly to the tumor." https://radixact.com/Radixact-how-it-works/
Why regret? well, in a perfect world, you would get your treatment at the best place possible......I have no proof that their treatment would be better but it is a big, world famous place with a lot of experience.....and they were the ones who properly diagnosed me.....but I don't live in Rochester and I could not see myself moving there for six weeks......and lining up people to be with me the whole time so my husband could keep working.....
I have no idea what your circumstances are......did you ever see the video by Dr. Michael B. Sisti about meningiomas in general and decision making? He helped me a lot. We don't make perfect decisions but we make decisions all the time as best as we are able. https://www.youtube.com/watch?v=sgh3H3tQiLs
The video is four years old but I think the concepts remain relevant. Good luck to you. Being nervous is being human when faced with this kind of stuff. all the best to you.

I haven’t had radiation yet and am a bit nervous about it honestly. What type did you have? And why do you regret not going to Mayo, if I may ask?

UPDATE:

I completed 28 sessions of radiation for Optic Nerve Sheath Meningioma in mid-July. I ended up not going to Mayo, with some regret.

I am wondering if anyone has an opinion/information about what type of imaging (and when)
is best for determining whether or not the meningioma stopped growing and the radiation was successful.

I still seem to be experiencing fatigue and a bit of, for lack of a better word, wobbliness at times.

Thank you .

Thank you Colleen. Yes, where to stay and who to stay with you as well....
I am quite "COVID" conscious, still, and so a congregate setting like the Hope Lodge with a shared kitchen is a bit scary for me as I also have Chronic Lymphocytic Leukemia and Small Cell Lymphoma which makes me more susceptible to infections.....I am taking two targeted therapies for CLL/SLL at this time and I have been told that I will have to quit those medications during the radiation treatment.....so, being immune compromised, I probably would be more comfortable someplace with an ability to cook in my room although I would miss out on the company and support of the Hope Lodge. Thank you for bringing this up.
My husband would be able to stay with me part of the time and I am trying to line up women friends who would be able to be with me the rest of the time. Thanks.

@santaflavia, one thing that might help your decision making might be where to stay. See this related discussion:
- Where to stay while having radiation at Mayo Clinic Rochester?https://connect.mayoclinic.org/discussion/lodginghousing/

The American Cancer Society Hope Lodge program provides a free home away from home for cancer patients and their caregivers. It also offers friendship and caring. (My father-in-law brought his guitar when he stayed at Hope Lodge during his treatment and was a hit among the fellow residents.)
https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge/rochester-mn.html
There are also Patient Navigators in Rochester who can help: cecptnavigator@mayo.edu Phone: 1-507-266-9288

I hope a friend can accompany you.

hello again, if anyone has any input re: making a decision about whether or not to have about 28 sessions of IMRT at Mayo v. at home (i.e. Froedtert in Milwaukee) I am still open to input. I sent out an email today to friends asking who, if anyone, would be willing to come up and stay with me for a week at a time so that my husband can keep working. (he could adjust his work so that he could come part of the time but not all of it) I was told that
I could not be in Rochester alone during treatment. Thanks.

Hello mkoch, thank you for your reply. Yes, I live in Milwaukee, but my understanding is that the radiation would be done in 28 sessions, which would mean moving to Rochester for five sessions a week for a total of about six weeks (not including the initial planning period.) Did you end up having your surgery at Mayo Rochester? How are you doing?
I see the local radiation oncologist tomorrow afternoon. Thanks again for your input.

Do you live in Milwaukee? Is that the reason to have the radiation done there instead of the Mayo clinic in Rochester, which is 4 hours away? When I was advised to have radiation for my a meningioma 1/16th of an inch from my optic nerve I was told the radiation schedule would be 5 days in a row, and then I would be done. That would be worth it to me to rent a hotel in Rochester for a week and know I am having the radiation done at a world renown medical institution. (As an aside, I chose to have a craniotomy to remove the meningioma instead.)

Hello Colleen, I just joined today after finding this with an online search. I have seen a radiation oncologist at Mayo via video visit and I will be seeing a local radiation oncologist
here in Milwaukee later this week. I am extremely anxious trying to make a decision whether or not to have radiation at Mayo for an Optic Nerve Sheath Meningioma or locally. I would appreciate any advice from others who have had the radiation at Mayo Rochester. Thank you. Today is April 21, 2024.

Hi @hamillc2 how are you doing recently? I am diagnosed with Optic Nerve Sheath Meningioma, I have lost my field vision, and doctor are recommending me to do a radiation therapy. I am confused whether I should opt in or out. Radiation Therapy may help on this, but I have a fear that it may create some other problem due to radiation. Did you face any problem after radiation till the date? Will really appreciate your feedback.