craniopharyngioma anyone? My 6 year old does.

Dad_of _Alyssa
Dad_of _Alyssa Member Posts: 1
edited March 2014 in Brain Cancer #1
My 6 year old has one of these growing in her pituitary gland, She had about 95% of the cyst portion of it removed last may via surgery. She's a rare case where the pituitary gland is still functioning and we've been holding off on radiation which will destroy it for certain. We're thinking about proton therapy at MD Anderson located in Houston or Possible more surgery and gamma knife locally. Anyone have any experience with proton therapy at MD Anderson or anywhere for that matter?


  • Hondo
    Hondo Member Posts: 6,636 Member
    Dad of Alyssa
    Very beautiful little girl you have. I have never taking Proton therapy but I hear the best place for Proton treatment is at Loma Linda Medical Center, I don’t have the web site but I am sure you can find it easy. I go to MD Anderson and really like the place but sometimes I feel like a number and not a person, don’t get me wrong they have some great doctors.

    I will put Alyssa on my prayer list
  • borbeck
    borbeck Member Posts: 1
    Craniopharyngioma surgery and radiation treatments
    My 65 year old husband was discovered with a craniopharngioma that was splaying his optic nerve, growing around his pituitary stalk and carotid artery. Mayo Clinic in Rochester, Mn removed as much of the tumor and cyst as they could last December. They could not remove all of it to preserve his eyesight, prevent a stroke or death from bleeding of the artery and maintain his pituitary gland functions. The surgery went great, however, the tumor/cyst returned within a couple months. It was once again removed and it again returned within a month of the second surgery. He then started 6 weeks of daily radiation treatments with Dr. Brown. The radiation worked on the tumor and the cyst has reduced by approx. 25%! The pituitary gland was slightly affected by the radiation, however, the specialists are not putting him on any hormones, at this time, to see if the pituitary gland will begin producing hormones on it's own.
    We can not say enough good about how we have been treated at the Mayo Clinic. With each doctor visit or treatment over the past 10 months they have made us feel like he was their only patient.
  • formyangel
    formyangel Member Posts: 1
    Craniopharyngioma 1 year after surgery
    Hello Dad,

    I am courious of what methods of follow up treatment you have chosen and how your daughter is doing, 1 year later. My 11 yr. old daughter has experienced the same surgery in