Bone Cancer: Adamantanoma

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  • Rhea Kutche
    Rhea Kutche Member Posts: 7 Member
    #22
    Felicidad said:

    Adamantinoma

    Hello, I was just diagnosed this week and completed testing for spread yesterday.  Because it is so rare and not well understood it is hard to make decisions.  I am 33, female.  It was found in my left tibia and I was diagnosed by biopsy.  Not sure when to get the wide margin surgery as it seems like a major surgery and Im not quite sure it is going to affect my mortality.  Will update as I get more info.

    Helllo,
    I am sorry to hear of

    Helllo,

    I am sorry to hear of your diagnosis?  I am also a female, and it is a Life Changing experience. I went from working 34 years of my life, to being on Disability.  No one can understand what we go through when we get that diagnosis.  I am wondering if you have gotten anymore information? 

     

  • Rhea Kutche
    Rhea Kutche Member Posts: 7 Member
    #23
    colleen50 said:

    Bone cancer-Adamantanoma left tibia

    Just joined, have had fibrous dysplasia since agd 7 which developed into this rare bone cancer which was just diagnosed this past February 2013. My surgery is scheduled for June 3 2013. They are replacing my tibia with my fibula. Has any one had this procedure? I know my fibula will eventually grow stronger but was wondering how long this will take. Also how long to walk and bear weight on my left leg. ANY INFO WOULD HELP, as this is a rare cancer it is hard to find anyone who has gone through it.

    Colleen50
    I have not heard of

    Colleen50

    I have not heard of this procedure?  I am from the Midwest and resection with Cadaver bone and titanium rod, was my only choice.  Which saved my leg.  I couldn't bear weight for almost 2 years.  It is a very LONG Recovery. At least my case it was.

    It is such a rare cancer, when I tell other doctors what I had been diagnosed with they don't believe me, so I have to carry my pathology report with me for proof.

    Would like to hear how you are doing?

     

     

  • Rhea Kutche
    Rhea Kutche Member Posts: 7 Member
    #24
    jposa002 said:

    Hi my son too was diagnosed

    Hi my son too was diagnosed recently, he is 14 yo.  We are looking to get a second or third opinion.  There seems to be the allograft option, donor bone.  And the fibula option form the other leg or from the same leg, seems like each doctor specializes in one procedure.  I'll like to know what are the outcomes with the different procedures. 

    At the time I was diagnosed

    At the time I was diagnosed there was only one procedure that my surgeon could come up with that may work, and that was using Cadaver Bones and titianium rod and hardware.  Long recovery and painful. But at the time, no other option available.  I don't know where you live, but Dr. Bruce Rougraff, Ortho Indy in Indianapolis Indiana, I really believe saved my leg and life.

    I hope this has helped

  • Jan1967
    Jan1967 Member Posts: 2 Member
    #25
    Rhea Kutche said:

    Helllo,
    I am sorry to hear of

    Helllo,

    I am sorry to hear of your diagnosis?  I am also a female, and it is a Life Changing experience. I went from working 34 years of my life, to being on Disability.  No one can understand what we go through when we get that diagnosis.  I am wondering if you have gotten anymore information? 

     

    H am new o his sit but my 13

    H am new o his sit but my 13 year old son has recently been diagnosed with a Oestro Fibrous Displasia - Like Adamantinoma.  He had an operation in Dec 2014 where the surgeon took a shark bite section out of his right tibia about half of the shin was removed.  He had a section of donor bone inserted and the front of the shin has been plated.  He has been in cast since the operation, but has just been moved to a half cast so that he can get some physio on his knee to get it moving again but he's still non-weight bearing - it is very painful.  What I want to try and find out is realistically what sort of recovery time are we looking at ?

  • sugary_snacks
    sugary_snacks Member Posts: 11 Member
    #26
    https://csn.cancer.org/discussion/comment/1221096#Comment_1221096

    How are you doing today? I see your post was from 10 years ago. My son had the same diagnosis as you except they called his OFD-like adamantinoma at age 11 last year. He's had a recurrence this year so I'm trying to find out more about everyone's journey down this difficult road. I hope things went well after your surgery.

    When you found out you had OFD in 2004, did they do remove the affected area at all?

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