Anyone familiar with Johns Hopkins treatment?

Scared in the South
Scared in the South Member Posts: 7
edited March 2014 in Sarcoma #1
I'm looking at heading out to JHU's Sarcoma Center for possible treatment if my mass returns as a liposarcoma. They seem to have a great team with 3 orthopedic oncologists, and a plethora of other specialists. I was just wondering if anyone's had good or bad experiences with them.

Thanks.

Comments

  • sufish01
    sufish01 Member Posts: 3
    #2
    I recently went to JHU for a second opinion/info on clinical trials. We met with Dr. David Ettinger. He seemed great and promised to look into all these trials for me and ordered the pathologist to test levels of this and levels of that . . . well, a month went by with NO WORD at all. I finally hounded his secretary until he called me back. He was less than cordial and said he was just a consultant and that he didn't promise me anything. He did say as a courtesy he would again order all these tests of my tumor sample. Another 3 weeks went by so I called the pathologist myself (nice man). Dr. Ettinger NEVER ORDERED any of the tests he said he would.

    If I wasn't so busy trying to take care of myself, I would figure out how to report him to an ethics board.

    We are now done with Johns Hopkins.
  • Scared in the South
    Scared in the South Member Posts: 7
    #3
    sufish01 said:

    I recently went to JHU for a second opinion/info on clinical trials. We met with Dr. David Ettinger. He seemed great and promised to look into all these trials for me and ordered the pathologist to test levels of this and levels of that . . . well, a month went by with NO WORD at all. I finally hounded his secretary until he called me back. He was less than cordial and said he was just a consultant and that he didn't promise me anything. He did say as a courtesy he would again order all these tests of my tumor sample. Another 3 weeks went by so I called the pathologist myself (nice man). Dr. Ettinger NEVER ORDERED any of the tests he said he would.

    If I wasn't so busy trying to take care of myself, I would figure out how to report him to an ethics board.

    We are now done with Johns Hopkins.

    Yeah, I've returned from my
    Yeah, I've returned from my appointment. I wasn't that impressed either. I was sent to an orthopedic oncologist because my original MRI was read as suspicious for malignancy. They had their radiologist reread it, and then it was read as a lipoma. They didn't want to biopsy it or anything, although it's a relatively uncommon location for a lipoma (not subcutaneous like most), and didn't seem concerned at all. Everything I've read online says that you can't really differentiate lipoma vs liposarcoma via imaging, and that a biopsy needs to be done. Apparently JHU feels differently.
  • onhold
    onhold Member Posts: 23
    #4
    Scared in the South said:

    Yeah, I've returned from my
    Yeah, I've returned from my appointment. I wasn't that impressed either. I was sent to an orthopedic oncologist because my original MRI was read as suspicious for malignancy. They had their radiologist reread it, and then it was read as a lipoma. They didn't want to biopsy it or anything, although it's a relatively uncommon location for a lipoma (not subcutaneous like most), and didn't seem concerned at all. Everything I've read online says that you can't really differentiate lipoma vs liposarcoma via imaging, and that a biopsy needs to be done. Apparently JHU feels differently.

    MRI's & diagnosis
    I hope you can get a biopsy from someone and get an actual diagnosis based on the tissue sample. We would highly recommend MD Anderson in Houston Texas if you can get in there. My husband was already diagnosed when we went there, I would suppose they would render a second opinion though. We have been treated extremely well there (6 mo chemo, 5 weeks radiation, surgery, follow up care). I wish you good luck.
  • catbird
    catbird Member Posts: 33
    #5
    onhold said:

    MRI's & diagnosis
    I hope you can get a biopsy from someone and get an actual diagnosis based on the tissue sample. We would highly recommend MD Anderson in Houston Texas if you can get in there. My husband was already diagnosed when we went there, I would suppose they would render a second opinion though. We have been treated extremely well there (6 mo chemo, 5 weeks radiation, surgery, follow up care). I wish you good luck.

    agree with "onhold" - I have a different sarcoma - try mda
    i have leiomyoma sarcoma, dig 8/09, going to mdanderson in houston 7/8 for further evaluation. they have a sarcoma center - it does take some time to get an appt but a good place to go for a 2nd opinion or longer treatment evaluation for an oncologist near you. you can ask for an appt on line & they will send you the info you need to fax & mail to them to see if they will give you an appt. take care
  • Scared in the South
    Scared in the South Member Posts: 7
    #6
    catbird said:

    agree with "onhold" - I have a different sarcoma - try mda
    i have leiomyoma sarcoma, dig 8/09, going to mdanderson in houston 7/8 for further evaluation. they have a sarcoma center - it does take some time to get an appt but a good place to go for a 2nd opinion or longer treatment evaluation for an oncologist near you. you can ask for an appt on line & they will send you the info you need to fax & mail to them to see if they will give you an appt. take care

    Update
    Well, I went for my 6-8 month repeat MRI, only to show that it had increased in size and the septae had thickened. Radiologist said it needed to be taken out for biopsy. Thanks for nothing, Hopkins. I'm meeting with a surgical oncologist tomorrow.

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