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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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Dolly Jane | @dollyjaneprenzel | May 9 8:55am
In reply to @steve2026 "One day in work I started to have terrible migraines out of nowhere. And then suddenly..." + (show)
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One day in work I started to have terrible migraines out of nowhere. And then suddenly I lost complete vision in my left eye. Was sent to ED and they done a MRI. Discovered a tumor and within an hour they transferred me to Beaumont. Had more CTs and MRI in Beaumont and they confirmed an 8cm x 3cm x 9cm tumor. 2 days later I had a craniotomy. 1 day in the high dependency unit, 2 days on a general ward and home for recovery. Called me with the results yesterday and it was a meningioma grade 1. Male 34 years old.

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@steve2026
I have one, but mine has not grown. So glad it wasn’t cancer. Hope your recovery goes well. Scary I know!

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as72 | @as72 | May 8 6:57pm
In reply to @steve2026 "One day in work I started to have terrible migraines out of nowhere. And then suddenly..." + (show)
Profile picture for steve2026 @steve2026

One day in work I started to have terrible migraines out of nowhere. And then suddenly I lost complete vision in my left eye. Was sent to ED and they done a MRI. Discovered a tumor and within an hour they transferred me to Beaumont. Had more CTs and MRI in Beaumont and they confirmed an 8cm x 3cm x 9cm tumor. 2 days later I had a craniotomy. 1 day in the high dependency unit, 2 days on a general ward and home for recovery. Called me with the results yesterday and it was a meningioma grade 1. Male 34 years old.

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@steve2026
glad it was grade 1 and you are recovering.
Where is Beaumont, California?

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steve2026 | @steve2026 | May 8 4:53pm

One day in work I started to have terrible migraines out of nowhere. And then suddenly I lost complete vision in my left eye. Was sent to ED and they done a MRI. Discovered a tumor and within an hour they transferred me to Beaumont. Had more CTs and MRI in Beaumont and they confirmed an 8cm x 3cm x 9cm tumor. 2 days later I had a craniotomy. 1 day in the high dependency unit, 2 days on a general ward and home for recovery. Called me with the results yesterday and it was a meningioma grade 1. Male 34 years old.

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mamita1931 | @mamita1931 | Apr 25 7:33pm

I was diagnosed with a Meningioma Tumor located on the right side of my brain, between the scull and the brain tissue.

I had a MRI done back in June 2025 after I complained about headaches, blurred vision and some times trouble speaking and walking.

Since I don’t have a job for the last four years due to many other health issues, I have only seeing a neurologist and I can’t afford to see a neurosurgeon whom I was asked to see regarding my case.

Lately I’m have been dealing with anxiety and moods changes, I’m only 55 years.

I was told it’s rare that a male my age was diagnosed with it, but it can happen.

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ndn1 | @ndn1 | Apr 23 8:55pm
In reply to @jeffpaeste "Jeff was diagnosed with Grade 4 glioblastoma (GBM), IDH-wildtype and MGMT-unmethylated, in December 2025. The tumor..." + (show)
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Jeff was diagnosed with Grade 4 glioblastoma (GBM), IDH-wildtype and MGMT-unmethylated, in December 2025. The tumor was identified after he suffered a grand mal seizure on December 21, 2025. Prior to this, he was in excellent health and maintained a very active lifestyle. Following the seizure, he was hospitalized for 24 days, including 11 days in the ICU.

His tumor is considered inoperable. Following his diagnosis, he experienced significant left-side weakness that affected his strength, mobility, and balance. His short-term memory, cognitive function, and vision were also impacted. Through 7 weeks of physical and occupational therapy, along with 5 weeks of cognitive therapy, he has made meaningful progress. He is stronger now, his movement has improved, and his memory and cognitive abilities continue to get better.

He completed 30 sessions of radiation and chemotherapy (TMZ) on April 8, 2026. We will be traveling to the Mayo Clinic to explore additional treatment options, and he is expected to begin Optune Gio with TMZ in May. I am also in communication with two clinical trials and praying he will qualify.

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@jeffpaeste what clinical trials are you hoping to get into? Only asking because I’ve been diagnosed with GBM gone through surgery to remove the tumor then 3 days later had emergency surgery to stop a brain bleed and to remove more of the tumor, 40 rounds of radiation while taking TMZ and 6 rounds of high dose TMZ. Now on the GIO wearing it everyday over 90% of the time.

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cabinlady | @cabinlady | Apr 22 4:50pm
In reply to @colleenyoung "@cabinlady, that's a lot of cancers. Your husband sounds like a real warrior. What helps him..." + (show)
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@cabinlady, that's a lot of cancers. Your husband sounds like a real warrior. What helps him get through these diagnoses and challenging treatments emotionally? How are YOU doing in your important role as caregiver and supporter?

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@colleenyoung

Hi Colleen, my husband has been very fortunate to have his kidney cancers stay stable. When i found out about his stage 4 Glioblastoma tumors I could hardly breathe. One of the things I think that helps my husband is that he has No idea his prognosis. I told all his doctors they are Not to tell him. I don’t want him to just focus on that. He just finished 3 weeks of radiation & 155 mg Temozolomide. In 1 month he has his CT & MRI for his kidney cancers & 2 months for MRI of his brain tumor. We have walked everyday, all winter long & now into spring. I try to keep his spirits high. We will celebrate our 50 anniversary this June. He has a lot of prayer coming at him. I met a lady that told me her husband lived 4 good years! I will take that, or a little more!!! He will be 73 in June

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Colleen Young, Connect Director | @colleenyoung | Apr 22 3:08pm
In reply to @cabinlady "@mavish My husband was diagnosed with Glioblastoma around Oct 2025. We decided to wait until the..." + (show)
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@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.

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@cabinlady, that's a lot of cancers. Your husband sounds like a real warrior. What helps him get through these diagnoses and challenging treatments emotionally? How are YOU doing in your important role as caregiver and supporter?

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Colleen Young, Connect Director | @colleenyoung | Apr 22 3:01pm
In reply to @hjean66 "We found out my husband (59) had a brain tumor on February 1 of this year...." + (show)
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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.

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@hjean66, I can imagine the emotional impact has been great for both of you. It sounds like you are staying strong to support him. This has happened so fast.

The emotional effects of a life-changing diagnosis and treatment are just as important to manage as physical side effects. I might suggest asking about help talking about these changes. Most cancer centers have specially trained social workers in cancer and/or palliative care. You might start by asking for a referral.

Here is more information about the role of oncology social workers.
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Some palliative teams also have chaplains or spiritual workers who can provide help or referrals. I'm sure staying fit and getting outdoors is a great help. Sometimes we need a bit of help.

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mcunningham78 | @mcunningham78 | Apr 20 2:56pm
In reply to @catv7 "Mengioma removed 4 years ago today. Some minor deficits include; hearing loss, peripheral vision loss, balance..." + (show)
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Mengioma removed 4 years ago today.
Some minor deficits include; hearing loss, peripheral vision loss, balance issues, muscle loss & MAJOR personality change.

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@catv7 hello! I had a craniopharyngioma removed 9/2025 and am having vision issues, not driving at night, light sensitivity and feel loss in peripheral vision even though I have passed the field test when last taken months ago. Other things dealing with since surgery. So sorry for your suffering.

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