I live in the Netherlands, 32 year old female.

When i was 15, a large ependymoma was resected from my spine.

When i was 28, it suddenly came back and it has been growing back since.

I have a grade 2 ependymoma in my spine. After 2 surgeries and proton radiation the tumors are growing back again. And much faster than i expected. My nerve pain is getting worse by the day.

My surgeon told me 2 years ago before they decided to do radiation therwpy, that surgery was too risky. The ependymoma is located at L5 to S1 and is growing pretty fast. The risk factors are because there is a lot of tumor tissue, scar tissue, and nerve tissue so at some point it’s hard to see the difference. They may cut away neves that locate my groin area and my left leg. Or they might not be able to remove everything and it will grow back again.

I want to know if i can take medications to slow down the growth, to be able to wait untill sugery just a bit longer because the coming months may be the only ones that i have left being able to pee, have sex and even walk. I feel like my doctors are not looking into alternatives and i’m not even able to reach them because of an overload of patients in the hospital.

If anyone knows something please help.