Connect
Proton or photon radiation for meningioma
Please share experience with proton or photon radiation.
I had type 2 right parietal meningioma. Surgery was successful but a small bit of tumor left along sagittal vein has grown a very small amount. I need to make a decision on type of radiation. I’d be very grateful to hear people’s experiences with radiation. What type & why? After effects? Fatigue? Hair loss? What else do I need to know?
Thank you
Like
Helpful
HugInterested in more discussions like this? Go to the Brain Tumor Support Group.
Connect
Thank you. I’m thinking of posting a weekly report on the treatments and their effects. Going for 5 month MRI tomorrow. Keeping fingers crossed that it’s not growing back.
-
Like -
Helpful -
Hug
2 ReactionsI agree that this YouTube video is reassuring.
What he does not mention is NGS (Next Generation Sequencing). This is a genetic test of the meningioma itself (not your genes, but the tumor's genes). Using this info, just in the last few years, research groups have been able to further stratify meningiomas into higher and lower risk for recurrence. In other words, for example, a meningioma might look fine under the microscope and be labeled Grade 1 but behave more like Grade 3 over time--higher risk of recurrence, more aggressive growth.
For this reason I have received the recommendation that I go forward with preventative radiation after complete removal of a parasagittal meningioma.
Right now considering photon vs proton radiation, and seeking a second opinion.
Any experiences with proton radiotherapy would be helpful.
-
Like -
Helpful -
Hug
1 ReactionDid you have removal of a meningioma? Treated with radiation afterwards or observation?
The video you recommend by Dr. Sisti in NYC I found so very helpful. I found it a couple of years ago before I had my proton therapy treatment at Mayo in MN for a 2nd meningioma (first one removed by crainiotomy with complications - so that is why I was researching options), and was so helpful for this clear education. I think every neurosurgeon performing surgeries on meningiomas should direct their patients to this video. I hope others make use of it.
-
Like -
Helpful -
Hug
1 ReactionI completed 5 rounds of cyberknife for my parasagittal meningioma. I am wondering why they are suggesting radiation when they had a complete removal? I would definitely get a second opinion nd possibly just monitor via mri. I know a lot of people in the radiation equipment business and did a very deep dive to determine proton vs photon. Bottom line is proton requires many more sessions and the cyber knife (photon) is the most used and studied. I had an incomplete surgical removal which slowly grew over 3 years. My surgeon at Hopkins suggested radiation. Got a second opinion from Georgetown and a third from a radiation oncologist friend from Sloan Kettering. All 3 recommended photon.
I had to take Ativan 2 hours before every 29 minute treatment to tolerate the mask. Much easier than anticipated and had no immediate side effects until this past week when my hair started falling out in very big clumps. This was one week after final treatment. Top of the head but much larger area than I expected. Hoping it will grow back.
I had no symptoms when they recommended radiation so this was a difficult decision. In hindsight I should have had it operated on much sooner when they could have possibly gotten it all out. Apparently partial surgery sometimes makes the remaining tumor grow especially in this area due to high blood flow. They anticipated being able to get it all but when he opened me up it was stuck to the dura. Good luck! Not sure I would rush into radiation if I were you….kim
-
Like -
Helpful -
Hug
4 ReactionsThank you for writing to me. I appreciate your perspective.
My neurosurgeon expected the meningioma to be touching the dura, and indeed it was. He removed a swath of dura and patched it. He judged the meningioma to be completely removed.
Yes, in the old days (5 years ago), anyone with Grade 1 meningioma with a complete removal of the tumor would NOT be told to consider radiation. Any Grade 2 or 3, even with complete removal, probably would be told that "adjuvant"(preventative) radiation would reduce the risk of recurrence. This radiation is applied to the "surgical bed"--the spot that used to hold the tumor.
BUT, now the use of NGS (looking for mutations and chromosomal losses and gains) lets us recategorize patients. Using the formula that the researchers devised, I get reclassified as a grade 3 meningioma, even tho the picture under the microscope looks benign. Because this increases my risk of recurrence, adjuvant radiation is being suggested.
The radiation oncologists making this suggestion have agreed that there is no research so far to prove that radiation would reduce my risk of recurrence. In fact, the researchers who devised the formula (in 2021, and I judge it to be excellent research) went so far as to say radiation therapy did not appear to have an effect on the rate of recurrence for us "restratified" people. It is indeed a leap of faith to say "but it might", and to proceed with radiation.
Their study looked back at people with meningiomas removed over 20 years--their WHO grade and their NGS results. Of course, the numbers of people with Grade 1 who received post-op radiation were small--because post-op radiation for Grade 1 is not standard of care!
There is a doctor named Stephen Magill at Northwestern who did research in 2024 using something called gene expression profiling which he believes will be proven to be the key to revealing which of us will actually respond to radiation therapy. I am trying to find out if this test is commercially available yet.
Tomorrow I will see a third radiation oncologist. He has apparently done some research in proton therapy which is available here now. Whether I proceed with radiation now or not, he will likely become my primary contact.
I do hope you have no further radiation side effects. And that that residual tumor stays quiet!
-
Like -
Helpful -
Hug
1 ReactionNot sure your comments are intended for me but surgeon left a very thin line of tumor around vein. They just noticed growth in that area. So question remains, photon or proton radiology to remove the bits. Cyber knife doesn’t seem to be an option. Thanks so much & very best.
-
Like -
Helpful -
Hug
1 ReactionI finished 30 treatments of Proton Therapy in December 2024 for a benign meningioma that is quite large. I had very few symptoms related to the radiation. Sore mouth and throat, headaches, and fatigue. But not to a point that was not manageable. Had MRI's in March, tumor was swollen due to radiation, will have more MRI's in August to see what kind of change there is if any.
-
Like -
Helpful -
Hug
3 ReactionsWelcome to the group, was that where they made a mask for you to radiate select spots?
Yes, the mask was intimidating to begin with, but as with many things you learned to manage.
-
Like -
Helpful -
Hug
3 Reactions