Anyone had Proton Beam Therapy for Meningioma?

I did the proton in Rochester Minnesota to zap what was left after my brain surgery then did 9 months pill form chemotherapy after that it's going to be 5 yearsnow and I'm doing great no reoccurrences

I start treatment next month for four weeks hope all goes well. Woody davis

I just wanted to check in. Tomorrow will be 2 weeks since the completion of my 28 Proton Beam treatment's. My energy level is better. I still have my double vision, they told me this may not improve (30%) chance. I have other side effects but hopefully in time they will improve. But hopefully the meningiomas will not grow any larger & cause further problems. Everyone at Mayo is wonderful & I feel like I got the best possible treatment. I hope & pray for all of you, that everyone does very well and we can all get on with a healthy life.

Welcome, @woody1234. Where will you be getting treatment? Do you have any questions as you prepare to upcoming treatment?

Hi I was just told that I have this tumor. What type of therapy is that?

Welcome @robineliza. Here is more information about meningiomas and proton beam therapy from Mayo Clinic.
- Meningioma https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643
- Proton Beam Therapy Program https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/home/orc-20185488

Treatment for a meningioma depends on many factors, including:
- The size of the meningioma and where it is.
- The rate of growth of the tumor.
- Your age and overall health.
- Your goals for treatment.

Have you discussed treatment options with your care team?

I had stereotactic radiation 21 years ago for my meningioma. It took time for the tumor to disappear, but over time it did. It still shows on the MRIs for about 5 years, but it was shrinking the entire time. Now it is gone, but I have developed a second one which I am dealing with. This new one was just discovered a few weeks ago, so I haven’t seen a neurosurgeon yet. But non-surgical options can be a better choice. My original doctor didn’t think I’d make it through surgery, so the radiation was my only alternative.

Hi,
I am learning more about my treatment options. I am also 54 and had meningioma tumor removed in 2023 and now being told I should do radiation treatment, combination of proton and photon radiation therapy. The remaining tumor is around my pituitary gland and optic nerve. I am curious about long term side effects and treatment. It seems that with tradtional radiation therapy there is more of a chance of long term side effects.
Thank you for sharing.

@jen0404
I have almost the exact same story as you just one year later. I am nervous about the radiation and wondering the same things. I am 52 and have read radiation can cause cancer and don’t want to do that to a “benign” tumor and then get a cancerous one. I have read that proton is supposed to be less risk. I don’t know

Hi,
I finished 30 IRMT treatments 2 months ago. I had minimal side effects: itchy forehead area, slight hair loss, and an appreciation for afternoon naps. The hair hasn’t started growing back yet, but the other effects have resolved. There is a chance of cancer developing after radiation treatment, but it is rare. I’m 68 so I figured that there are now equal chances of something else getting me besides cancer. Some of the possible long term effects are cognitive decline and brain necrosis. But they are also rare. At a certain age they may not be distinguishable from normal aging.