• Fibroblastic Osteosarcoma of the jaw

    Asked by Katie_D on Tuesday, August 13, 2013

    Fibroblastic Osteosarcoma of the jaw

    My father has been diagnosed with fibroblastic osteosarcoma of the jaw and is currently undergoing chemo with a major surgery in October scheduled to remove the entire bottom half of his jaw and use bone from his leg to reconstruct a jaw, rehabilitation, and then apparently more chemo. The doctors took 3 months to properly diagnose this and had to send the biopsy to Harvard to get it diagnosed since this apparently is a very rare type of cancer due to its placement. I cannot help but be very fearful of his treatments and surgeries due to the fact that the doctors/hospitals seemed so unsure before and after the biopsy and some places wouldn't even treat him due to it being rare. I cannot help but feel unsettled. I think hearing from someone who has survived or is undergoing treatment for this type of cancer in the jaw would benefit me greatly. Any experience regarding this would be appreciated. Thank you so much.

    5 Answers from the Community

    5 answers
    • Bigg_Scott's Avatar
      Bigg_Scott (Best Answer!)

      Hi Katie,

      I was diagnosed with fibroblastic osteosarcoma in the right maxilla (upper jawbone) when I was 26. Like your dad, I was told this is a very rare location and was sent by doctors in Cheyenne, WY to doctors in Denver, CO, and finally to doctors in Houston, TX for treatment. I had chemo, radiation, and surgery. It was all done in about half a year. I am just about to turn 33, so I am going on 7 years cancer free.

      The doctors didn't offer me a prognosis (I think they base those on statistics, and they don't have good statistics for rare cancers) beyond one doctor shrugging and saying "there's maybe a 50% chance you'll be alive to come talk politics with me in 5 years." (I never went back to see that guy, even on my 5 year mark, because he was kind of a jerk. LoL. Though most of my other doctors were excellent.)

      My case was very similar to what your dad is going through. Feel free to ask me any questions.

      With hope,
      Scott

      about 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      @Bigg_Scott, thanks so much for answering on this one, it's always good to find someone who has had a similar procedure or diagnosis, but more so on a rare type. Congratulations on the 5 year + mark too!

      about 6 years ago
    • acalltofaith's Avatar
      acalltofaith

      Hey Katie,

      I am a bone cancer survivor and can relate to a lot of what you are saying in your post. It took them about 3 months also to properly diagnose my rare condition, which is called Ewing's or PNET sarcoma. I live in Charleston, SC where at the time there was no major cancer center. I believe this is why it took them so long to figure it out.

      The first thing you have to do is go to a MAJOR cancer center hospital like DUKE, Sloan Kettering, etc. They will send your pathologies to other hospitals around the country to get multiple opinions. Plus they have seen the "rare" cancers more often than other places.

      Also, even the major cancer centers differ in the way they treat the disease. I would go to at least two if not three in a case like yours to see what is being done. I went to Duke and they wanted to take off my arm and use a cadaver bone for it and my shoulder. Then I went to NIH and they had state of the art titanium prostheses, which I ended up going with.

      Best of luck and let me know if I can answer any questions.

      about 6 years ago

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