Best Osteosarcoma limb salvaging doctor

mys
mys Member Posts: 2
in Bone Cancers #1
My 11 years old daughter was recently diagnosed with Osteosarcoma of the distal tibia. Since it is in the ankle join section, it is very complicated, our bone doctor said he cannot do it and he recommand Dr Temple in Miami, and we also talked with Dr Webb from John Hopkins where we do the chemos, she suggestted amputation which we don't like, is there anybody here had a similiar situation? and has some suggestions on limb salvaging ?

Comments

  • brownpbandj
    brownpbandj Member Posts: 1
    #2
    Osteosarcoma Docs
    I'm sorry to hear about your daughter's diagnosis. I can understand a little of what you are going through as my seven year old son had multi-focal osteosarcoma (meaning it was in four places at the same time), and he had exdtensive limb-salvaging surgeries. We saw lots of surgeons in an attempt to find the best, so I can recommend two: Dr. Robert Henshaw at Washington Hospital Center http://www.whcenter.org/body.cfm?id=556712 and Dr. Joh Healey at Memorial Sloan-Kettering http://www.mskcc.org/cancer-care/doctor/john-healey. Henshaw did all four of Mattie's surgeries including: the complete right humerus, the proximal half of the left humerus, the distal left radius (by taking a portion of his right fibia and using that) and his distal right femur including the knee joint. All but the left radius were replaced with a prothesis called Repiphysis technology http://www.wmt.com/physicians/products/oncology/REPIPHYSISExpandableTechnology.asp, so I suggest you explore it to see if it is a possible option. Good luck to you and your daughter and your familiy as the childhood cancer road is a journey that forever changes you.
  • osteo_survivor
    osteo_survivor Member Posts: 5
    #3
    10+ year survivor
    I am so sorry to hear about your situation. I was diagnosed over 15 years ago with osteo sarcoma of the rt proximal tibia. Mine was so advanced (it was there for YEARS) that doctors were certain they were going to amputate. I was distraught and asked a battery of "what-ifs" until my genius Stanford tumor surgeon came up with the Limb Salvage i have today. Every doctor i see says it is miraculous--there truly is nothing like it. Dr Mohler at Stanford crafted a one-of-a-kind work of art. I have a new knee, no tibia or fibula (a metal rod instead) and lots of pins and screws. if you are looking for a second opinion, he is your doctor. In the process of working out my surgery, there were a few other things that came up to save the bone. I met one of the little girls that this was done for :) I don't know your case, but it may be worth a shot to send over your daughter's records and get a consult.

    If you have anymore questions, or want to talk, please feel free to email.

    maggiesrich@gmail.com

    Best,
    maggie
  • Mikew418
    Mikew418 Member Posts: 2
    #4
    brownpbandj said:

    Osteosarcoma Docs
    I'm sorry to hear about your daughter's diagnosis. I can understand a little of what you are going through as my seven year old son had multi-focal osteosarcoma (meaning it was in four places at the same time), and he had exdtensive limb-salvaging surgeries. We saw lots of surgeons in an attempt to find the best, so I can recommend two: Dr. Robert Henshaw at Washington Hospital Center http://www.whcenter.org/body.cfm?id=556712 and Dr. Joh Healey at Memorial Sloan-Kettering http://www.mskcc.org/cancer-care/doctor/john-healey. Henshaw did all four of Mattie's surgeries including: the complete right humerus, the proximal half of the left humerus, the distal left radius (by taking a portion of his right fibia and using that) and his distal right femur including the knee joint. All but the left radius were replaced with a prothesis called Repiphysis technology http://www.wmt.com/physicians/products/oncology/REPIPHYSISExpandableTechnology.asp, so I suggest you explore it to see if it is a possible option. Good luck to you and your daughter and your familiy as the childhood cancer road is a journey that forever changes you.

    Humerus surgery
    Sorry to hear about you son, but I was wondering if you could share some info with me. I will be having right humerus surgery is about a month. What was his recovery time ? Range of motion he regained and any other info that you might be willin to share

    Thank you

    Michael j Wenger

    Mjw41851@gmail.com
  • crazy98
    crazy98 Member Posts: 25
    #5
    osteo_survivor said:

    10+ year survivor
    I am so sorry to hear about your situation. I was diagnosed over 15 years ago with osteo sarcoma of the rt proximal tibia. Mine was so advanced (it was there for YEARS) that doctors were certain they were going to amputate. I was distraught and asked a battery of "what-ifs" until my genius Stanford tumor surgeon came up with the Limb Salvage i have today. Every doctor i see says it is miraculous--there truly is nothing like it. Dr Mohler at Stanford crafted a one-of-a-kind work of art. I have a new knee, no tibia or fibula (a metal rod instead) and lots of pins and screws. if you are looking for a second opinion, he is your doctor. In the process of working out my surgery, there were a few other things that came up to save the bone. I met one of the little girls that this was done for :) I don't know your case, but it may be worth a shot to send over your daughter's records and get a consult.

    If you have anymore questions, or want to talk, please feel free to email.

    maggiesrich@gmail.com

    Best,
    maggie

    long term survivor
    Maggie-

    That is so great to hear!! I celebrate 13 years May 10th! I had osteosarcoma in my tibia. I had limb salvage along with 2 other knee replacement surgeries. I have started a blog about survivorship if you have time check it out! http://ialwayswantedtoshavemyhead.blogspot.com/2010/10/passing-test.html
  • AnnChicago
    AnnChicago Member Posts: 1
    #6
    Osteosarcoma of the distal tibia
    I hope all the treatments went well for your daughter. My 17 years old son was diagnosed with Osteosarcoma of the distal tibia at University of Chicago Hospitals a few days ago. His doctor said that amputation might be needed which we don't like, we asked the doctor about limb salvaging surgery, his team re-studied my son's case, and said that, as the tumor is small enough, they can do the limb salvaging surgery.
  • johnkolivas
    johnkolivas Member Posts: 2
    #7
    Mikew418 said:

    Humerus surgery
    Sorry to hear about you son, but I was wondering if you could share some info with me. I will be having right humerus surgery is about a month. What was his recovery time ? Range of motion he regained and any other info that you might be willin to share

    Thank you

    Michael j Wenger

    Mjw41851@gmail.com

    Kalei
    Hi,

    I'm John Kolivas. My daughter Kalei, 12 years old, was just diagnosed with osteosarcoma in her upper left arm. We are still waiting for the Mayo Clinic prognosis. We live in Honolulu. How's it going with your right arm? Did you find out some information on recovery time? Thanks.

    John
  • susie921
    susie921 Member Posts: 2
    #8
    AnnChicago said:

    Osteosarcoma of the distal tibia
    I hope all the treatments went well for your daughter. My 17 years old son was diagnosed with Osteosarcoma of the distal tibia at University of Chicago Hospitals a few days ago. His doctor said that amputation might be needed which we don't like, we asked the doctor about limb salvaging surgery, his team re-studied my son's case, and said that, as the tumor is small enough, they can do the limb salvaging surgery.

    limb salvage.
    My daughter was seen at the University of Chicago for osteosarcoma. We have moved to Northwestern Children's Hospital, the limb salvage surgeon who was so expert at the University of Chicago is now working at Northwestern's Children's Memorial you could get his opinion. His name is Dr. Peabody and he has been doing limb salvage a long time. Quite the expert. Always get a second opinion, and quickly just call and explain the situation they will squeeze you.
  • Jessica40
    Jessica40 Member Posts: 2
    #9
    osteo_survivor said:

    10+ year survivor
    I am so sorry to hear about your situation. I was diagnosed over 15 years ago with osteo sarcoma of the rt proximal tibia. Mine was so advanced (it was there for YEARS) that doctors were certain they were going to amputate. I was distraught and asked a battery of "what-ifs" until my genius Stanford tumor surgeon came up with the Limb Salvage i have today. Every doctor i see says it is miraculous--there truly is nothing like it. Dr Mohler at Stanford crafted a one-of-a-kind work of art. I have a new knee, no tibia or fibula (a metal rod instead) and lots of pins and screws. if you are looking for a second opinion, he is your doctor. In the process of working out my surgery, there were a few other things that came up to save the bone. I met one of the little girls that this was done for :) I don't know your case, but it may be worth a shot to send over your daughter's records and get a consult.

    If you have anymore questions, or want to talk, please feel free to email.

    maggiesrich@gmail.com

    Best,
    maggie

    Osteosarcoma distal tibia

    Good Morning Maggie. My name is Diane and my 40 year old daughter Jessica has been diagnosed with osteosarcoma distal tibia. I am new to this site but out of desperation I am looking to get a second opinion for Jessica. She has completed the schedule of chemotherapy and is now at the stage of deciding which surgery is best. The three options she has been given are not great and the orthopedic oncologist is leaning to amputation. The other two are 1) cadaver, 2) a resection and fusing her own bone leaving her with one leg five inches shorter than the other.  I'm not sure if you are still checking in to this site so I will just ask if you are to email me. Allen.diane09@gmail.com. I appreciate your thoughts. Now I need to write a blog on her situation. By the way we are in Michigan and believe to have great doctors at Henry Ford in Detroit. she wants a second opinion and I full heartedly agree. Just don't know where to begin. Thank you.

  • moore81
    moore81 Member Posts: 3
    #10
    I am sorry to hear about your

    I am sorry to hear about your son. I do not know of any similar situation, but i hope you find a solution 

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