Anyone had Proton Beam Therapy for Meningioma?

I had it four years ago on my tumor which rests on my optic nerve. I had 28 treatments and all I can say is it was non evasive and so far my tumor has not changed and that's the best I can hope for. It is unoperable and it's really my only hope. I had MRI's every 6 months until this year. Now going forward once a year unless there is some change. It has definitely helped me to return to a normal life, will it last for the rest of my life I have no idea. Just grateful to have the chance to move forward with my life for whatever time is possible.

Thank you for your post. Mayo also recommended 28 Proton treatments on my cavernous sinus meningioma also. Did you have any cognitive deficits? Pituitary problems? I’m checking with MD Anderson to see if they recommend the same. But I feel confident that Mayo’s program is great. Where did you go for your Proton treatments?

I'm currently having proton bean radiation for my meningioma tumor grade 2. After a second opinion and my own research, I decided to go with this option. Can't tell about results as I just have done 3 sessions/30 total and all is going great. I'm a health care provider so have access to the Pubmed library through my work. The more educated you are about this, the better you can make decisions. To address your question, proton beam does not "eradicate" the tumor. The purpose of its to put the tumor in remission for some years, hopefully several. This radiation stops the tumor from growing but it doesn't eliminate it. By disrupting the growth, hopefully patients will enjoy some years with quality of life but still being followed periodically depending on each person's protocol. If is very localized, so the risk of damaging surrounding tissue is likely less than that of conventional radiation, however, more research is being done to see if there is significant difference between proton beam and conventional radiation. What my doctors explained to me, is very in line with what I have read in some studies. Every case and tumor are different, so no one treatment fits all. Treatments are personalized for each patient depending on their condition, grade of tumor, location, age of the patient, general health condition, and availability of this equipment. I found many useful comments in this support group, so I'm absolutely committed to reciprocate as I navigate my own experience. Best of luck in your journey!

As an update- I’m having treatment #8 today of Proton Radiation at Mayo in Rochester MN. The treatments are going well and no significant side effects as of yet. There are two Meningiomas they are treating & one just watching. They believe mine to be grade 1.
I find this site encouraging - and I appreciate all comments- esp Pat22. Best to all as we travel and maneuver our same and yet different roads.

I have been told that proton treatment will stop the tumor from growing and does not remove it. My surgeon has told me that mine Meningioma has to come out. I am scheduled for 2-14-24. Can anyone enlighten me? Thank you.

This is to Pat 22. I would love to know how you are as you are now finished with your treatments.

I have been told that proton treatment will stop the tumor from growing and does not remove it. My surgeon has told me that mine Meningioma has to come out. I am scheduled for 2-14-24. Can anyone enlighten me? Thank you.

I finished my treatments 2 months ago. I had 30 sessions ( keep in mind everyone dosage per treatment is different depending on area). Mine is sphenoid wing meningioma grade 2. I did really well. Some side effects I'm having: left ear plugged, pulsatile intermittent tinnitus ( noises in ear), and some pain on the radiation side. All normal as the brain recovers. I can work as before. I needed to saty home 2 weeks after I was done at Mayo because I did get some fatigue. I have cognitive fatigue (but not delay, which is different). I'll have my first follow up with MRI in February, so 3 months after completion of treatments. Overall, really grateful. Mayo is a great place to be for this treatment. I pray for the tumor to be in remission and no regrowth.