Anyone like me?

So I was diagnosed with a brain tumer at the age of 5. I am 25 now but still remember everything i went through like it was yesterday. I was completly cancer free on September 11th 2002, pretty much the worst day to be celebrating something like this. Well its been several years since then but im still struggling to deal with some of the side effects. Unlike most oationts going through treatment i did not undergo chemo therapy. I went throu 100% radiation and lots of it, mostly to the back of my head and spinal coard. This had a major inpact on my brain and growth and a whole lot if other stuff. I get asked a lot by people why my face looks the way it does. I feel im pretty normal but every time someone makes a comment about how i look or someone asks me why my face it is the way it is I get very mad. So mad i want to just punch them. I cant help it. Im mad i got cancer but there is nothing i can do about it. I get very jealous when i see othe guys hanging around really cute girls and stuff like that.

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  • Jetterman7Jetterman7 Community Member
    edited July 2015 Vote Up1Vote Down
    hi, my case is similar. I was diagnosed at 8 and am now 25. I had 95% removed in surgery and the rest treated with the max radiation my body could have and chemo. for years after i had mri's to make sure everything was clear. kids made fun of me at first because i lost all my hair with chemo but radiation killed 90% of the hair follicles. so only 10% of my hair grew back. i grew to not care after years. graduated high school, went to college, got an associates. 13 years later i was 21 during college and they told me i have a spot on my pituitary stock. biopsy revealed cell of the previous tumor survived and moved location. after 4 year of just watching it we moved to MD Anderson for a second opinion. treated locations not previously radiated with proton radiation. it shrunk by a 1/4. chemo still ongoing for 6/12 months. so from previous treatment- growth and cognitive problems and many that i need to take meds for because my body doesn't. before coming to MD Anderson with the 4 years we waited, my vision went bad and now I can't drive among other things. I am very self-conscious and shy, a lot having to due with me being over weight, mostly cause by my many problems caused by previous treatment but some hereditary. so for now I sit at home doing nothing until we make the trip to Houston for bloodworm, an mri and to see the dr. then if she says blood-work good i begin my 5 days of chemo a month at home and 23 days off. which thankfully after 17 years they have developed a pill form of chemo. and I'm making that trip here in a couple of days to do the whole process again.
  • stupidthyroid06stupidthyroid06 Community Member
    edited August 2015 Vote Up1Vote Down
    bunit620, Jetterman7,

    My husband had a brain tumor, as well. He was diagnosed at 6 years old with medulloblastoma. He is 27 now. If you both would like, I can let him know to talk to you about your situations. He is always willing to speak with people who have a similar diagnosis and story. Let me know if you are interested.

    Thinking of both of you.
    Dori
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