Optic nerve sheath meningioma, worried about results 3 month checkup
I just returned from Mayo Rochester for my three month checkup. I finished 6 weeks of proton radiation Oct. 4. My MRI last week showed it to be a bit larger and it absorbed a bit more contrast. Told me not to get too worried. I can’t rule out in my head that it is getting larger. At first I thought it might still be swollen, but they told me that would have gone away about 6 weeks after. I have to return in 6 months.
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@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.
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.
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1 ReactionUPDATE:
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 .
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1 ReactionI 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?
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
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.