I am a 28 year old father with brain cancer. - AMA! I am a 28 year old father that has brain cancer. I had a tangerine-sized grade II oligoastrocytoma tumor removed 3yrs ago from my right-frontal lobe. I completed radiation treatment, and took ora...

Are your children old enough to understand this? If yes, how their behavior/love towards you changed after knowing this?

I've lost a lot of time with the upbringing of my daughter. She was basically 2 when I had my first surgery, and... well... I'm sure she sensed something was different with her dad. My wife is also Russian, so as she wasn't speaking much English, we didn't communicate as much as I would've liked. I really love her and hope for the best, but it isn't easy.

​

She's 4 now and definitely not able to understand it. She knows her dad had an operation on his brain and it affected him a lot. That's about it. She doesn't get the severity of it being back again, unfortunately :(

Wait, your wife is Russian but you only speak English?

I speak beginner / intermediate Russian. It’s a hard language.

I have a few follow up questions...

Давай

Stay positive and know you can beat this thing! How are you doing with the news?

Still a little bit in denial. Found out about re-occurrence last week, and haven't been sleeping well. Bringing back some trauma of my first hospital stay, which was agonizing. I'm very anxious to meet with my fantastic neurosurgeon soon.

If you don’t mind me asking, was it the emotional or physical part that was agonizing, or perhaps both?

PCV chemo

Both. I would say physical 'uncomfortableness', and the cognition changes were the most agonizing.

You can beat this! Our best wishes are with you. How did you keep yourself cheered up and motivated throughout?

Peoples encouragement, my daughter, my life, the small things. And of course-family, and really having no option. And believe me.... it’s hard to stay motivated and positive. Thanks.

Is there anything you or your family might need? For the holidays? For a weekend? For shits and giggles?

High quality coffee and/or marijuana lol

Thanks for taking the time to do this. What was the very earliest symptom you experienced and how long did you wait after that to seek medical attention?

Thank you.

My earliest symptoms were I had an episode where my whole left field of vision went black for maybe an hour. Likely tumor pushing on my rain. Then months later, when I would be trying to fall asleep, I would have seizures. The re-occurrence was caught on a routine 6-month MRI.

What's the prognosis if the biopsy comes back and it's the same type as before?

Not sure. I need to talk with my neurosurgeon/pathologist once brain tissue results come.

​

I believe that if it the same grade, grade II, then they will do PVC chemo infusions and beam radiation.

​

As far as prognosis, not sure, because this time it is a surgically inoperable spot, so it depends rate of growth and other things. I will know much more once I meet with her. I'm just at a standstill at the moment.

​

Before this re-occurrence, they had told me my prognosis was "5-15 years". Not sure if that was prognosis for re-occurrence or life expectancy; honestly don't care. :).

(Excuse me for my lack of knowledge on this, but this is why I'm asking!) how long (and how often?) do you spend getting scans, and treatments? I'm assuming that it would vary but perhaps you can give me an estimate for how long it takes (on average?)

I understand that at this stage it must be hard for you to sometimes accept where you are going in life..more often than not when I feel down about things, I try to start my day off by finding gratitude in things which I have. I find this brightens my mood and my perspective

The MRI is always like a 1 hour ish procedure. After surgery, started with MRIs every 1 month, then 3 month 3 month 3 month, 6th month, Then again this one was6 month and we were going to ask if can change mri to once a year., but obviously things have changed.

Is that the Beta Knife Surgery?

I haven’t ever done beta knife surgery. So r know much about it - or cyber knife or whatever either Am- no idea

Sorry to hear that the cancer is back. Thank you for sharing your story with us. Has your perspective on life changed, or have you been thinking or doing anything differently, since getting your cancer diagnosis?

Pretty much my whole perspective on everything has changed. I have a lot of experience feeling like shit, so when I’m not uncomfortable or feeling like shit I’d like to think I appreciate living more. Small things are more important now. Cognition has been something I have had to work on. Has to do therapy, had to relearn to use left side of body after surgery, etc.

[deleted]

I would say it has affected my executive functioning. Thinking, my personality, decision making, humor, problem solving. directions, etc. feelsbadman

[deleted]

When it affects your personality it's anything but cool. I had a co-worker with a glioblastoma and it changed his personality. To those of us who knew him we knew it wasn't really him, it was pressure on part of his brain but when a stranger or just someone who didn't know him would come by he would be viewed as incredibly rude. It was awful because he was a genuinely nice person who enjoyed helping others.

Yeah. I'm definitely not happy about my personality changes and I try to stay aware of them as I don't want this cancer changing who they know.

I don't believe I should not be held "accountable" for anything. Sure, there's a big cavity where there's supposed to be brain, but it's a small portion compared to the brain at large.