• Glioblastoma

    Asked by Katie_W on Sunday, August 3, 2014

    Glioblastoma

    Does anyone know a lot about glioblastoma in my age?

    16 Answers from the Community

    16 answers
    • barryboomer's Avatar
      barryboomer

      Check out Dr. Bursynski in Texas...Spelling is wrong....

      almost 7 years ago
    • Marketka1's Avatar
      Marketka1

      How old are you.My husband got it 47.He is doing good.I believe he is healed in name of the Jesus.Amen.He is 51 now.God is biger than cancer. Doctors have to tell you the worst, but it works for everybody different ways.

      almost 7 years ago
    • aroache's Avatar
      aroache

      You are right, it is different and caught early at an early age it is more manageable. As well doctors have learned a lot over the past ten years in managing the aggressive nature of the hideous disease. Good luck and keep the faith.

      almost 7 years ago
    • Marketka1's Avatar
      Marketka1

      Thank you.Same to you.

      almost 7 years ago
    • Katie_W's Avatar
      Katie_W

      I'm 19 years old

      almost 7 years ago
    • aroache's Avatar
      aroache

      I loss my girlfriend a little over a year ago after a 16 month battle. I have been following the progress of other and have had improved optimism because with each day battles are being extended beyond what is considered the norm. She was 59 with a family history of cancer losses. The biggest hurdles faced in post diagnosis treatment was the lack on consensus among surgeons, oncologist and others on treatment protocols.

      I can't begin to know what one feels throughout this journey I do believe her journey was made easier because I took every step but the last step with her. I hope that your steps are many more and that someone is there to take those steps with you. We sometime lose site of how important love is healing and providing comfort to the love. May god bless you with the love you need to make your journey a long one.

      almost 7 years ago
    • Katie_W's Avatar
      Katie_W

      I just can't find anything on it in my age group :/ I've never been one to get sick at all and this whole thing is surreal. Being a rare case is horrid because there's no studies that I can find specific to my age or anything :/

      almost 7 years ago
    • aroache's Avatar
      aroache

      What I have found in my research by normal health standards this is new and most likely has been misdiagnosed for years, or diagnosed and not knew what to call it. There have been studies that indicate it is genetic, they are not sure at all. As I indicated they really still don't know how to treat it. The only certainty is removal of the tumors the earlier the better. After that it is a crap shoot, because there is no agreement on how the prevent the tumors from reoccurring.

      I wish I could just sugar coat this and pretend I have the answers, but I do have hope that with each new encounter comes more knowledge, a better understanding. I continue to learn and hope and offer support where I can. Reach out to me in any way you need I don't have the cure or all the answers, I can however offer to take as many steps with you long distance as you need. I will provide you with whatever contact information you need.

      Tony Roache
      Philadelphia, PA

      almost 7 years ago
    • barryboomer's Avatar
    • dhtdiver's Avatar
      dhtdiver

      How old are you? There are people in my Brain Tumor support group who were diagnosed with GBM 20-25 years ago and are still going strong...see if there is a group in your area.

      almost 7 years ago
    • aroache's Avatar
      aroache

      It is truly wonderful that people are living longer past the 13 months that her surgeon indicated. I think one of the many keys like anything else is early detection and family genetic history. Based on the size of the two tumors she had, they had been growing for sometime un-noticed. Youth gives added strength to the battle, however each battle is still different. I sincerely hope your battle is short and your victory long.

      almost 7 years ago
    • Katie_W's Avatar
      Katie_W

      Thank you! We don't have anyone in the family that had this so it's hard to say. They also don't know how long the tumor had been growing. I just have only met one other 20 yr old with it. What stage was her? Do you know how big of a difference that makes?

      almost 7 years ago
    • aroache's Avatar
      aroache

      One of the biggest unknowns is the rate of growth is very unpredictable, She had two tumors on the left side of her brain and was at stage 4 and it affected her speech and motor control on right side. So I noticed from interacting on this site and from her medical support team is where the tumor occurs matter on how devastating the cancer is. When this whole thing start the surgical staff indicated that if they took all of the tumor the rate of growth would be more aggressive, so they took about 98% of the tumor and treated the rest with radiation and chemo. For a short period of time she was cancer free and the tumors return and grew more like a spider web down into her brain making it inoperable. She has been gone over a year and I will continue my efforts to learn , understanding and hopefully challenge the medical community to take a closer look at this disease because it is being diagnosed more often. Tony ([email redacted]). I am here it you need me. We never know when god smiles and makes bad things good, I pray that he smiles n you.

      almost 7 years ago
    • Katie_W's Avatar
      Katie_W

      Thank you that was helpful :)

      almost 7 years ago
    • Suzy-q's Avatar
      Suzy-q

      I was told Glioblastomas are not genetic, And if it is going to re-occur, it's USUALLY within the 5 year bracket, I finished treatment (Tumor Di-section, chemo, radiation) in Aug 2010. I was 55 at time of Dx.

      over 5 years ago
    • Suzy-q's Avatar
      Suzy-q

      Aroache, is right, the rate of growth is a HUGE unknown factor, The only other thing i will add to my above post,would be prepare for the worst, as the doctors prepare you for, but ALWAYS,ALWAYS HOPE FOR THE BEST!!

      over 5 years ago

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