Share Your Brain Tumor type & Years since Diagnosis

@justk
My husband had a hemangiopericytoma 40 years ago which invaded nasal bone & surrounding tissue. He had multiple surgeries until clean bone & skin margins could be obtained. I am RN so was able to take him home in between pathology days. He did such a great job with his skin flap. I had to slowly take him out to mall to show him no one was staring at him. After first surgery I could tell was returning ( mid diagnosed). So took him elsewhere. I believe he had 4 gig of radiation3xweek for about 2 months . We are Blessed it has never returned. We declined bone graft surgery. I was frightened the skin flap wound not heal again at the time. He hasn’t had a reoccuranceWe were blessed with a good MD & prayers as we were so much younger. Now at 70’s I am dealing with a missed inoperable skull based tumor. Will write a seperate post after holiday!

@daki
Hope you are recovering and doing well. did you know it was glioblastoma prior to craniotomy? Be well.

Hi, I was diagnosed w glioma in 2009, not p119q deleted but more recently found out that I AM IDH positive. Had radiation and Temodar back then. Had craniotomy in Nov of 2025 & am trying the IDH inhibitors but my neutrophils get too low. Always hopeful other new treatments will present themselves.
Glad to have this group!

@daki I’m glad to hear you are functional and understand that other issues associated with your condition can be challenging. Praying for you…and your family 🙏🏾

Hello. I’m new to this group. I have been diagnosed with Cushing’s disease in 2025 and have a very tiny pituitary adenoma that I’m having surgery on at the end of April because my cortisol levels tend to be high. I’m not the typical Cushing’s patient I’ve been told and I happened to stumble upon this diagnosis. I’m glad so that I can get this taken care of and get my cortisol under control. I chose to have this done at the Mayo Clinic as they rank very high in dealing with pituitary tumors.

I had craniothomy on March 5. It is glioblastoma 4 wild type. Still waiting for radiotherapy and Temodal, six weeks reccommended. I am functional and I am grateful for that but having some psihological issue to deal with diagnosys since no major symptoms were present

@colleenyoung He had MRI on March 10 which showed small recurrence. Gamma Knife scheduled for April 1. TMZ stopped and will start Lomustine. Also restarted Avastin. He does not walk outside much anymore but stIll does enjoy mowing the lawn.

@reginamyers1958 how are you doing now? I was just diagnosed last December with meningioma with edema. Did follow up mri last week. Waiting for my follow up visit with neurosurgeon this week.

@rosebud1981 how are you doing now? Did you have it removed? How old are you? I was just diagnosed with meningioma with edema and calcification on left frontal anterior lobe and want to remove it by craniotomy. Never heard of ninengioma?

MRI from March 10 showed a small are that wasn't there in November. After review by tumor board it is felt to be recurrence. We were told it couldn't be in a better place for Gamma Knife. Will have procedure within next couple of weeks. We continue a day at a time.