Share Your Brain Tumor type & Years since Diagnosis

Posted by jstow07 @jstow07, Aug 8, 2018

Hey everyone I was diagnosed almost 7 years ago with a medulloblastoma in my right cerebellum. Completely removed followed by proton radiation. No reoccurrence since. Just curious what everyone else has and how many years and treatment

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hjean66 | @hjean66 | 2 days ago

We found out my husband (59) had a brain tumor on February 1 of this year. Initially docs thought it was slow growing and nothing to be concerned about but wanted another MRI done, this time with contrast. We had to wait until the 23rd and in that time the tumor had doubled. Initial visit with Neurosurgeon on February 26, Pre-op on March 2 with surgery on March 3. It took almost 4 weeks before we got the official diagnosis of Glioblastoma Wild Type, unmethylated. He started radiation and Temozolomide on March 23. It has been so overwhelming, and he is so sad all of the time. He is handling his treatments well, no side effects so far, still does his strength training, core exercises and walks/jogs for 40 minutes most days. Has trouble eating as much as he should though. Physically he feels great, emotionally he is a wreck.

cabinlady | @cabinlady | 2 days ago

In reply to @mavish "My hubby in the hospital waiting for a biopsi. His symptoms started less than a month..." + (show)

@mavish

My husband was diagnosed with Glioblastoma around Oct 2025. We decided to wait until the first of the year 2026 to have the biopsy. Wanted to wait for biopsy of his prostate & ablation of his esophagus were done. So we found out he was stage 4. He also has kidney cancer since 2017. Lost a kidney & part of his left lung. He has cancer spots on his other lung, liver & pancreas with a mass on his spleen. He just started radiation March 30. He is right now in his 3rd week & is doing great!! No side effects. We walk everyday, he eats well & looks healthier than most “healthy” people. Met a lady last week that said her husband lived very happy for 4 years. My husband will be 72 in a month.

MeccaLecca | @meccalecca | 3 days ago

Posterior Fossa Meningioma Type III -Softball-Sized, Had a Blood Supply, and was Attached to my Brain Stem & my Carotid. It required Two Craniotomies, One VP Shunt, an Embolization, and Stereotactic Radiation (38 doses).

Diagnosed/First Treatment - December, 2026.

My tumor and it's intervention consequences ended my Double-PhD studies in Literature and Gender Studies.

daki | @daki | 5 days ago

In reply to @as72 "@daki Hope you are recovering and doing well. did you know it was glioblastoma prior to..." + (show)

I had some toughts due to the MRI description

mavish | @mavish | Apr 8 9:08am

Sorry to hear passing of your husbund and thank you for sharing.

I am trying to decide between comfort care and KT+RT. Currently he is bedridden, and has significant cognitive decline, do not know where he is, date year or time. Cannot orginize his toughts , lost his short tem memory. All happened in 3 weeks.

Did RT and Chemo improved quality of life? Or add more challanges?
Thanks again for sharing

kylebar | @kylebar | Apr 8 4:40am

My husband was diagnosed in 2022 with two GBM tumors. He was 76. They did not remove either tumor. We were told they would just grow back even faster. He did a few radiation treatments and the chemo pill. None of it helped him. He only lasted 107 days. I wish the best. GBM is a terrible cancer.

mavish | @mavish | Apr 7 7:42am

My hubby in the hospital waiting for a biopsi. His symptoms started less than a month ago and progressed rapidly.MRI indicates glyoma it is 7×4 cm inoperable, due to location and size. I appreciate to hear other's experiences.

judyandchloe | @judyandchloe | Apr 6 8:58am

My younger brother recently got a diagnosis of stage 4 glioblastoma. Told the tumor is in a “good place” for removal…hoping to have LITT treatment. At Mayo Clinic-gets the neurononcologists final diagnosis this afternoon - sees the neurosurgeon on Thursday. Our family and brother are on pins and needles waiting for the “word” today. Praying for many years of life ahead.

daki | @daki | Apr 6 4:57am

In reply to @as72 "@daki Hope you are recovering and doing well. did you know it was glioblastoma prior to..." + (show)

@as72 I had some opinions of radiologyst that is glioma of high gradus. I understand that MRI shows a lot. Final confirmation was after craniothomy.

luvcats | @luvcats | Apr 5 5:38am

In reply to @justk "I was diagnosed with a hemangiopericytoma in June 2017. I had surgery in July 2017 and..." + (show)

@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!