It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Bone Disorders Message Board

  • Bone tumor - I need help !

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 03-18-2005, 04:50 AM   #1
    barbie64
    Newbie
    (female)
     
    Join Date: Mar 2005
    Posts: 2
    barbie64 HB User
    Unhappy Bone tumor - I need help !

    My 9 year old broke his tibia/fibula in December snowboarding. They casted it - he did not need surgery. When the cast came off in February (after 7 1/2 weeks in the cast) the doctor said that "it is almost healed - come back in 2 weeks for another xray). My husband (fortunately) saw a wierd spot on the xray and asked what it was. His response was "it's just a bone cyst - that is why I want to re-xray it. After lots of question to the dr concerning this, we just didn't feel comfortable regarding his diagnosis and the fact that he wasn't even going to tell us. We also looked back at the prior 2 xrays from his office and it appeared that on at least one of them, the cyst was there.

    We made an appointment with a pediatric orthopedic (the other was just an orthopedic - we were in the middle of a heavy snowstorm and couldn't make it to our children's hospital when this injury occured).

    Anyway - we took the xrays with us from the initial ER visit and the last xray. The pediatric orthopedic did yet another xray (just 12 days since the last). It looked as though bone was growing in that area. He confirmed that the prior xray was "wierd" - he wasn't sure if it was a cyst and said he would have done an MRI because it was odd but since this xray looked better he just wanted to re-xray in a few weeks. We went back in 3 and unfortunately the "wierd" spot was apparent again.

    He sent us for an MRI. The radiologist comment was that he thought it was a reactive response to the fracture and recommended re-xraying in 4 weeks. It is solid - it does not contain fluid. Our doctor however said he feels it is just wierd enough that he is sending us to a pediatric tumor specialist. Unfortunately this doctor is on vacation until March 29 - but we do have an appointment that day.

    I am freaking out ! I am so concerned it is cancer. The doctors response to this concern is that he really doesn't think it is because it isn't fitting a pattern of anything bad (like all those things I'm reading about on the internet) but it isn't a bone cyst.

    I want to also mention that the initial xray right after the fracture does not show this spot. My only comfort with this is that it wasn't there prior to the fracture (unless that xray is deceiving me).

    Can anyone shed any light? I'm a basket case and so is my husband who rarely worries about anything!

     
    Sponsors Lightbulb
       
    Old 03-21-2005, 08:57 AM   #2
    CheerAngel
    Senior Veteran
    (female)
     
    Join Date: Jan 2004
    Posts: 564
    CheerAngel HB User
    Re: Bone tumor - I need help !

    Hi there, I know how worried you must be for your son. But worrying too much may not be that good since they haven't said that it could be cancer. Sometimes the internet can be too overwhelming with all the different kinds of information they have online!

    I have a bone tumor but luckily, my orthopedic surgeon told me that it's benign and there's only a very little chance that it might turn maglinant. Bone cancer is rare unlike the other cancers like leukaemia or brain tumors in children which are more common. Bone cancer causes a lot of pain and that's one of the symptoms.

    If I'm not wrong, you mentioned that your son doesn't have the cyst there before the fracture. I guess that when the bone was healing, it left(grown) a bump there or something. I have a friend whom had fracture her leg and now the site of the fracture has a bump that could be the extra bone that had grown during the healing. She doesn't has cancer and the bump doesn't bothers her.

    I know every case is different but I would like to share with you what I know, and am not telling you that it is what your son might have. It might be just a benign tumour which needs or doesn't need any treatment. Take care and good luck! Hope this helps!

     
    Old 04-04-2005, 01:07 PM   #3
    hrtofluv
    Senior Veteran
    (female)
     
    Join Date: Jul 2003
    Location: Oak Ridge, TN, USA
    Posts: 648
    hrtofluv HB User
    Re: Bone tumor - I need help !

    Barbie64,
    Curious as to what your tumor specialist thought as well as how your son is doing.
    Thinking of you!
    hrtofluv

     
    Old 04-08-2005, 06:02 AM   #4
    lilsunshine46
    Veteran
    (female)
     
    Join Date: Nov 2003
    Location: Centreville Va USA
    Posts: 408
    lilsunshine46 HB User
    Re: Bone tumor - I need help !

    I had a giant cell tumor{benign} and I will tell you that the pain I felt was so bad I used to get in the hottest bath water every night and cry. As the other poster said every case is different.
    You are on track by sticking with the specialist , but don't back down. Right now my daughter has a tumor on her ovary that was only found when she had an US on her kidneys which were also found to be damaged.Her drs were so focused on her other problems, she has a psuedotumor{Cerebri} from excess spinal fluid in her brain that her other symptoms were being ignored. Even when I kept telling them she was getting sicker and that something didn't fit. Moms sometimes know when our kids aren't feeling well or we know their bodies.
    The tumor I had was in my body for a long time and I had been to drs many times and they would always focus on another part of my body, say the ruptured disc in my back instead of my knee .Even when I finally went and said I think I can feel a tumor on my knee the family practice dr actually laughed at me, this while my knee was the size of a canteloupe and I couldn't bend it without pain.
    Good luck to your son.

    Last edited by lilsunshine46; 04-08-2005 at 06:04 AM.

     
    Old 04-08-2005, 04:48 PM   #5
    barbie64
    Newbie
    (female)
     
    Join Date: Mar 2005
    Posts: 2
    barbie64 HB User
    Re: Bone tumor - I need help !

    Thanks for asking for an update. The orthopedic oncologist viewed the MRI and said that he felt this wasn't anything bad. He said that by now he would have experienced severe pain if it were anything "bad." He said there were numerous possibilities but felt that we should just continue doing x-rays occasionally to be sure it doesn't change. He also said that if he begins having pain, we are to call. He doesn't want to see him again unless things change we are just to go to the orthopedic surgeon for follow-up. He actually has an appointment again with him on Tuesday.

    He does have a small bump on the outside of his leg that is somewhat tender. He told us that this is in the same area as the lesion but he was not concerned that it was tender only to the touch (actually you have to press on it fairly hard for him to say that it kind of hurts). My husband and I both wish we would have taken our cassette recorder and taped the conversation because I really do not remember what he said this was. I'm thinking he mentioned "fibrous" but now I am not sure. Any ideas on that?

    I still have concerns but feel much better.

    Thanks again for checking on us.

     
    Old 04-10-2005, 10:26 AM   #6
    CheerAngel
    Senior Veteran
    (female)
     
    Join Date: Jan 2004
    Posts: 564
    CheerAngel HB User
    Re: Bone tumor - I need help !

    Hi 'barbie 64', I'm glad to hear that there's nothing serious like cancer and that your son only needs follow up to monitor the bump. Well, I'm having my follow up tomorrow and I guess everything will be alright too.

    All the best to yall!!!

     
    Old 04-11-2005, 06:59 AM   #7
    hrtofluv
    Senior Veteran
    (female)
     
    Join Date: Jul 2003
    Location: Oak Ridge, TN, USA
    Posts: 648
    hrtofluv HB User
    Re: Bone tumor - I need help !

    Let us know how the appt tomorrow goes.
    Curious what the ortho will say.
    Thinking of you!
    hrtofluv

     
    Old 04-12-2005, 07:26 PM   #8
    enginelz
    Junior Member
    (female)
     
    Join Date: Aug 2004
    Posts: 14
    enginelz HB User
    Re: Bone tumor - I need help !

    let us how the doctor appoiment went and hope everything will be alright

     
    Old 05-07-2005, 09:21 PM   #9
    shaukc
    Senior Member
    (female)
     
    Join Date: Apr 2003
    Location: Texas USA
    Posts: 192
    shaukc HB User
    Re: Bone tumor - I need help !

    Hello Everyone

    My son has a bone tumor also on the lower leg - and his ankle stays blue all of the time -
    we went to the first orthopedic for six months and he finally told us that my son was faking - just trying to get out of pe - how can you fake a blue ankle ?
    Anyway the second one just sent him to therapy - that made it worse

    then the third one immediately fed exed my sons films to a pediatric oncologist - then we ended up having to go see the oncologist

    we where told that my son had a infection in the lining of the bone - he ordered a bone scan to see if the infection was still in the lining or was in the bone too - since he had this for nearly a year

    the bone scan came back as activity at the tumor site - so the infection is also in the tumor area

    my son is scheduled to have the tumor removed on June 13th -

    my sons muscles in that leg are going away and he falls alot because that leg is weak - we where told that if we did not have it removed now then the bone would break and then they would have to go in and put screws and rods in

    the more he walks on the leg the worse the blue gets around the ankle - i was told that the blue ankle is blood pooling from the tumor area

    Last edited by shaukc; 05-07-2005 at 09:33 PM.

     
    Old 05-08-2005, 10:24 AM   #10
    CheerAngel
    Senior Veteran
    (female)
     
    Join Date: Jan 2004
    Posts: 564
    CheerAngel HB User
    Re: Bone tumor - I need help !

    Hi 'shaukc', I'm glad that you had a third opinion. I can't understand why did the first 2 orthopeadic didn't do the right thing? Does your son has any pain in the ankle or the only symptom is the blue ankle? Is there a lump that can be felt too? How big is it? So was the tumor that caused the infection in the bone?

    I hope that the surgery will go well for your son! Keep us updated! All the very best!!!

     
    Old 05-09-2005, 10:37 AM   #11
    shaukc
    Senior Member
    (female)
     
    Join Date: Apr 2003
    Location: Texas USA
    Posts: 192
    shaukc HB User
    Re: Bone tumor - I need help !

    Hello Cheerangel

    My son has lots of pain in the ankle and sometimes he has pain in the tumor area .
    They told me that the tumor had nothing to do with the infection at first - then the bone scan showed the activity in that area .

    I do not feel a lump . I will look at the report a little later and see what it says about how big it is .
    I know that he is going to have a four inch cut in his leg .

    I am really upset with the first two drs - i know that it would not be this bad if it was caught a year ago when we first took him to the dr

    It must bleed more when he is on it more because the blue spot gets bigger and goes more up the leg

    thanks for all of the help - i am really scared about all of this .

     
    Old 05-09-2005, 10:50 AM   #12
    hrtofluv
    Senior Veteran
    (female)
     
    Join Date: Jul 2003
    Location: Oak Ridge, TN, USA
    Posts: 648
    hrtofluv HB User
    Re: Bone tumor - I need help !

    shaukc,
    Sorry to hear about your son's problem. I definately understand the frustration of misdiagnosis. I too was not diagnosed correctly for 6 years, but they did take the tumors seriously from the 2nd opinion doc on. The first ortho doc wanted to take the wait and re-xray in 6 month approach. Did not sit well for me and my mom.
    It took going to NIH to be diagnosed - a wonderful facility with fantastic docs. Has your doc given you a name for this tumor? Or can you tell us what the tumor looks like on xrays from the report? I have benign bone tumors called angiomatosis of the bones. They are blood-filled tumors and bleed.
    What kind of surgery are they planning on doing? I know that the docs at NIH told me that if I were ever in an accident and needed surgery - that I would need to go there. That the regular surgery will not work for me.
    Not trying to scare you - but inform you of your options. Stay as informed as you can and I applaud you for continuing to get opinions until you found out the real cause of his symptoms.
    Please keep us informed as to how things go.
    I'm here if you have any questions.
    hrtofluv

     
    Old 05-09-2005, 11:05 PM   #13
    shaukc
    Senior Member
    (female)
     
    Join Date: Apr 2003
    Location: Texas USA
    Posts: 192
    shaukc HB User
    Re: Bone tumor - I need help !

    Hello

    I do not think they know really what it is until they get in there . At first i was told that it was a non occifying cortical defect and that it was benign .

    On xray to me it looks like it is maybe three inches long and going nearly half way through the bone . They are afraid that the bone is going to break - then they will have to put rods and screws in they said .

    My son was in so much pain tonight that he asked me if they could go ahead and do surgery . He has fell two times this week and the ankle is so blue right now .

    They are trying to wait until school is out to do it . That is only a couple weeks away .

    they are going to go in and scrape the tumor out and fill the bone with something like bmp that will make the bone fill in faster . And it will take more than three monthes for the bone to fill in .

    Keeping him still that long is going to be my biggest problem at that time .

    Last edited by shaukc; 05-09-2005 at 11:08 PM.

     
    Old 05-10-2005, 08:34 AM   #14
    CheerAngel
    Senior Veteran
    (female)
     
    Join Date: Jan 2004
    Posts: 564
    CheerAngel HB User
    Re: Bone tumor - I need help !

    Hi shaukc

    I'm feel for you and your son... having to go through this painful time.

    Sometimes they do a bone biopsy to determine what type of tumor it is while other times, they wait till they have taken it out in surgery and then send it to the pathology. I have a benign tumor on my femur which requires also about a 4 inch incision but it ain't giving me alot of pain so am not taking it out. If your son has to wait a few more weeks... will the infection go deeper? Did the doctor tell u about the infection: whether it has stopped or ...? I'm not scaring you but I've heard stories about infection eating away the bone as nothing is done to it soon... Is he on any pain meds to cope with the pain? Can he cope with school?

    I pray that your son's surgery will go well without complications! Keep in touch.

     
    Old 05-10-2005, 11:56 AM   #15
    shaukc
    Senior Member
    (female)
     
    Join Date: Apr 2003
    Location: Texas USA
    Posts: 192
    shaukc HB User
    Re: Bone tumor - I need help !

    Hello Cheerangel

    My mother asked the dr if it was ok to wait until school was out and he told us that since he has had this for a year that it would not hurt to wait a few more weeks .

    I am scared about waiting but they want to wait until school is out - then the dr is going to be gone the first two weeks in june .

    Since he had had this so long is the reason that it is in the bone now . It started out just in the lining of the bone .

    They are going to send it off after they get it out to a pathologist .

    It is hard for him to cope with school - he has missed alot . On the real bad days i keep him here and off of the leg .

    He is on a very high dose of motrin . That is all they gave him .


    Got to get off of here - thanks again for all of the help . Shauna

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Bone Cyst/Tumor DazzledStar Bone Disorders 19 10-05-2010 10:58 AM
    Bone tumor discovered on my proximal femur jellinger Bone Disorders 6 05-05-2010 11:41 AM
    Bone Lesion Marbrit Bone Disorders 15 05-27-2009 06:57 PM
    bone cyst ubc jonsmom Bone Disorders 46 04-14-2008 06:38 PM
    recurrence bone tumor GCT of the proximal tibia lottieloz Bone Disorders 1 02-13-2008 07:15 AM
    PLEASE HELP Giant Cell Tumor Bone Graft not healing LtFoot10 Bone Disorders 9 01-17-2008 01:15 PM
    Need Help with info on Bone Tumor & Bone Scan jessandjeff123 Bone Disorders 10 07-12-2006 06:49 PM
    pain with a bone lesion? michelle3030 Bone Disorders 3 02-16-2005 07:32 PM
    benign bone tumor CheerAngel Bone Disorders 7 05-01-2004 02:46 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 09:18 PM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!