Anyone had Proton Beam Therapy for Meningioma?

@mkoch, glad to know you’re asymptomatic and the meningiomas are stable. There are many people who have tumors of that size and never know it.

@jasonl1012

I feel the same way, how fast will this grow and is it best to wait and do later when we see changes. My oncology tema is suggesting both types of radiation proton and photon. There seem to be pros and cons with the choices.

@kdog1957: I'm going to segue off your comment of "there are now equal chances of something else getting me..." I have two remaining meningiomas, 6 and 8 millimeters. My neurologist said, "You need to get those radiated." He sent me to a radiation oncologist. The radiation oncologist agreed. However, the neurosurgeon who did my craniotomy 2 years ago said since the meningiomas are not causing symptoms, and they are slow growing (typically 1/8th an inch a year) he suggested active surveillance (a.k.a. watch-and-wait). I think my neurosurgeon is thinking that at my age, 73, something else is gonna get me before those meningiomas grow to a point that they are causing symptoms. And I'm happy to report my MRI 3 weeks ago show no growth in a year for both remaining meningiomas.

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.

@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 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.

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.

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?

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

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