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@maryluise2

I am diagnosed by NF1 since i was a child but doctors didn't knew that so in 2015 i had an MRI on the brain so they saw a brain benign tumor and it was not supposed to grow but i was doing an MRI every now and then to see if there is any growth so in 2018 i got tried so much and i was vomiting all time, and severe headache, balance problems i want eating at all so i did a surgery called endoscopic third ventriculostomy. Also i was doing an mri every 3-6 months. Bur in 2020 the tumor had a significant growth so i had to remove it but it was not totally removed but my brain tumor was benign and not cancerous it was called Pilocytic Astroctoma. But i know that NF1 produce nerve tumurs, breast cancer so do you think a benign tumurbthat was not totally removed may come back again or can i devalop any type of tumor in future?

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Replies to "I am diagnosed by NF1 since i was a child but doctors didn't knew that so..."

Welcome, @maryluise2. I'm glad to read that the pilocytic astrocytoma tumor was non-cancerous. However, since it was not completely removed, I can see that you are very concerned that tumors may develop in the future because you have neurofibromatosis 1 (NF1). This genetic disorder that causes tumors to form on nerve tissue.

I moved your message to this existing discussion:
- Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1) https://connect.mayoclinic.org/discussion/schwannomatosis-nf/

I did this so you can connect with others members like @nfrunner @painwarrior @jontan @lmp1 @joyajoe @pkindron @keikowacko @schwannjohn @kathp, who also have experience with neurofibromatosis.

Mary Luise, what does your medical team say about the risk of new tumors developing for you? How often do you get MRIs now?