Meningioma: Getting ready for radiation, any tips or advice?

I’m in the same phase. I hate mine partially resected and will get MRIs to see if/when it grows the next step would be radiation. Let me know how it goes! Best of luck!

I will know more next week when I meet with the radiation oncologist. I am blind in my left eye from birth, so I may be able to get higher dosages since they are not worried about it affecting my sight in that eye. I hope yours does not grow back. I knew there was a chance with grade 2, I just didn't expect it this quickly. Best wishes!

pabw,
Though I do not know the extent of the radiation that you need, I do have a suggestion if it will be allowed for you.
When I was to start my radiation treatment, I was told that I had to go to downtown Houston to receive it....daily. It would have been a minimum 1 hour each way of traveling for this daily 10-minute appointment, because this was where the radiologist had an office. I refused.
Amazingly, they had an office that provides radiation appointments that was only 20 minutes from where I lived. That is where we agreed for me to receive the radiation.
If you can receive radiation at a location that is much closer, do it. It will benefit you emotionally.
Sandy

Thanks Sandy. I have my 1st meeting with my radiation oncologist this coming Tuesday. They said it could last 1 1/2 hours. It has been hard waiting for it. Hope all is going well for you!

Hi @pabw, how did your appointment with the radiation oncologist go? What type of radiation treatment will you have and how many treatments? How are you feeling about it all?

My appointment went a little different than I was hoping. The tumor is growing in a very sensitive area. There are a few radiation options, but the radiation oncologist would prefer I have surgery again. He is consulting with other doctors, so I am hoping to know more tomorrow or the first of next week. Never know what life will bring us. Working hard tontrust God and know He will be with me through whatever comes.

Hi. Your story sounds similar to my husband's. His meningioma has grown back in the cavernous sinus and now has invaded the right eye orbit. He no longer has use of his right eye. The surgeons at Duke aren’t willing to do surgery in that area stating it’s too risky. He has been told in the past that they wouldn’t recommend more radiation but he is going to meet with a new radiation oncologist this week. Where exactly is your tumor located and where do you receive your care? We have received another opinion from John’s Hopkins and that surgeon recommends surgery but insurance won’t allow my husband to go there. We too are trying to trust God as we maneuver through this process but some days are definitely tougher than others. Good luck to you on your journey!

Mine is in the left cavernous sinus. I am blind in my left eye since birth and worry about losing sight in my right eye. My neurosurgeon, neurologist and radiation oncologist are all located in Sioux City, Iowa. Treatment may take place in Omaha, NE, 130 miles from where we live. God's blessings on you both! He will guide you through this challenging time. Hopefully you will know what treatment could help. The waiting and not knowing is a challenge. Best wishes!

Found out today that I will have conventional radiation. It will be the safest route to go. It has an 80% success rate. I will go M-F for about 5 1/2 weeks. Best wishes for you!

My tumor was removed on December 28. See a radiation oncologist minday to talk to him about possible radiation, but not sure if th prevent future goeth or wait to see if it starts to go back then do radiation. I not sure about course to take. Mine was a grade 3. I am like y’all . I want to trust God, but the future looks a little scary . I sure don’t want to don’t want to do surgery again. I already have trouble with speech and memory issues not the same as before surgery. Sorry y’all going through all this, but it is nice to communicate with someone that has gone through this.