liposarcoma

reese
reese Member Posts: 3
edited March 2014 in Sarcoma #1
Posting here for people who have gone thru this for hopefully some insight. Im in a hospital now that doesnt specialize in treating sarcoma but the only cancer center in the area. In the hospital mostly due to pain and size makings walking difficult. Surgeon, radiology, radiation oncology etc basically the whole "team" looking at my case have said probably sarcoma waiting on full biopsy to determine type. Surgeon has said it is connected to muscle tissue in my thigh with alot of blood vessels running thru it.

What concerns me is they are convinced it is sarcoma (the radiologist is the only one who will say liposarcoma the surgeon wont comment until biopsy report). I mean the fact he offered his view on it is strange enough to me but how can they be so convinced it is without the biopsy report? Ive even asked well what if you are wrong and its not its just benign answer I got was simple "its not going to be". Im comfortabble enough witht he doctors in terms of how they talk/feel to me but that doesnt necessarily make them good to handle this.

Is it that possible for everyone looking at your case to be convinced something is maligant without a biopsy? Can an MRI/ctscan, sonogram all that Ive recieved be that clear an indication? Ive had radiation oncology come in, doctors from the cancer center etc all come in an talk to me. Is this normal before they have decided what type/stage etc this is? Im pretty much flying blind here and been busy looking up whatever information I can on it but just unsure. The plus side to it Ive been told by the ocnologist is that the mass is relatively very soft which can be a good indication...nothing Ive read has indicated that.

Comments

  • alison21
    alison21 Member Posts: 6
    #2
    Hi Reese sorry to hear that
    Hi Reese sorry to hear that you are going thru all this worry, but be patient and wait for the results to come back. I am a 4 year survivor of a liposarcoma behind my left knee, I had it removed and had 8 weeks of radiation, no chemo as they tell me Chemo does not work well on sarcomas. My advice after you find out what you are dealing with is find a very good doctor, ask heaps of questions, cry if you want to cry and think positive.
  • reese
    reese Member Posts: 3
    #3
    alison21 said:

    Hi Reese sorry to hear that
    Hi Reese sorry to hear that you are going thru all this worry, but be patient and wait for the results to come back. I am a 4 year survivor of a liposarcoma behind my left knee, I had it removed and had 8 weeks of radiation, no chemo as they tell me Chemo does not work well on sarcomas. My advice after you find out what you are dealing with is find a very good doctor, ask heaps of questions, cry if you want to cry and think positive.

    Thanks just concerns me they
    Thanks just concerns me they all seem convinced this is what it is even before the results, hopefully today will have it...I mean its pretty screwed up having radiation, cancer department personal etc all come in and basically prep you for what they think is coming without having final results. I just never knew Mri, sonogram, ctscans could be THAT give that much of a clear indication. I even jokingly asked the radiological guy about odds all you guys are wrong on this and he just shooked his head, hospital case manager comes in basically says they wouldnt be sending all these people in unless they are pretty much convinced it was etc things like that. It's just pretty overwhelming sitting here in a hospital feeling fine other then my leg, difficulty walking etc and having every doctor walking in convinced there is something wrong with you and seem to set that results are simply a matter of what staging vs whatever it is malignant.
  • bmscan
    bmscan Member Posts: 37
    #4
    What's the Outcome ...Waiting Is the Hardest Part
    It does sound good that you are getting the attention. From my experience, liposarcoma is self contained (unless left alone and it metatisizes).
    I had a somewhat similar initial experience. A doctor who hadn't really work with Liposarcoma, but he did the work to get it right.
    My initial diagnosis by doctors was through MRIs and then an initial incision biospy (right shin). Subsequent tumors were needle biospy because they had something to compare it to. Hopefully you'll only have this one.
    (There's more but for now just be patient. Waiting is the HARDEST part.)
  • reese
    reese Member Posts: 3
    #5
    bmscan said:

    What's the Outcome ...Waiting Is the Hardest Part
    It does sound good that you are getting the attention. From my experience, liposarcoma is self contained (unless left alone and it metatisizes).
    I had a somewhat similar initial experience. A doctor who hadn't really work with Liposarcoma, but he did the work to get it right.
    My initial diagnosis by doctors was through MRIs and then an initial incision biospy (right shin). Subsequent tumors were needle biospy because they had something to compare it to. Hopefully you'll only have this one.
    (There's more but for now just be patient. Waiting is the HARDEST part.)

    Well surgical biopsy says it
    Well surgical biopsy says it is an angiopiloma aka benign blood vessel tumor...Im obviously relieved but also extremely pissed at the whole episode with the hospital of being scared out of mind by them, and I actually got my results from physical therapist by mistake instead of my actual doctor initially...lovely. 2 weeks of terror followed by needle biopsy that they go oops sorry wasnt sufficient to determine followed by surgical biopsy and this result, not even sure how much I trust them after all the crap they put me thru. Regardless given the massive size and pain associated with it because of its size it has to come off. What a nightmare, obviously it could have been far, far worse.

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