I could use some sarcoma advice...

KMHeredia
KMHeredia Member Posts: 2
edited October 2011 in Sarcoma #1
Hi folks,

I thought I'd drop in here and see if anyone has any advice for me. Not sure where to go...

I recently had a tumor removed from my leg. It was sent to a local lab and diagnosed as a sarcoma. The doctor had it sent to a national lab to find out what kind of sarcoma it is and how advanced it is, and it's been there three weeks. I can't seem to get any answers.

Is it normal to take three weeks?

I got a message from the medical assistant today saying that the lab decided to do another stain.
Does anyone know what that means?
Has anyone had a similar experience?
It'd sure be nice just understand this process.

Thanks a lot to anyone who might want to share.

Comments

  • Linsay
    Linsay Member Posts: 3
    #2
    KM
    Hi,

    It really depends. I think a strain is they want to test it again. When I was diagnosed, it was diagnosed the first time as a Fibrosarcoma and then with a second look from the University of North Carolina Cancer Hospital, it was found to be a synovial cell sarcoma.

    The process can be long, it took two-three months for me to even get a clear answer and get a general direction of where I was heading. It's alot of wait and see and it can be very stressful. Just hang in there. You should call your doctor directly and ask him for a timeline. Oncologists are generally very nice and like to ease patients' minds.

    Best of luck!
  • KMHeredia
    KMHeredia Member Posts: 2
    #3
    Linsay said:

    KM
    Hi,

    It really depends. I think a strain is they want to test it again. When I was diagnosed, it was diagnosed the first time as a Fibrosarcoma and then with a second look from the University of North Carolina Cancer Hospital, it was found to be a synovial cell sarcoma.

    The process can be long, it took two-three months for me to even get a clear answer and get a general direction of where I was heading. It's alot of wait and see and it can be very stressful. Just hang in there. You should call your doctor directly and ask him for a timeline. Oncologists are generally very nice and like to ease patients' minds.

    Best of luck!

    Thanks so much. That does
    Thanks so much. That does help to know that it's normal to wait so long. I'm probably going to post another thread because I just got a call and he said the pathology report came back as round cell sarcoma. My appointment isn't until Thursday, so I'd really like to know what that means. There doesn't seem to be too much on it online.

    Thanks again :)
  • ZiegenSauger
    ZiegenSauger Member Posts: 4
    #4
    KMHeredia said:

    Thanks so much. That does
    Thanks so much. That does help to know that it's normal to wait so long. I'm probably going to post another thread because I just got a call and he said the pathology report came back as round cell sarcoma. My appointment isn't until Thursday, so I'd really like to know what that means. There doesn't seem to be too much on it online.

    Thanks again :)

    Round Cell Sarcoma
    Hello KM,

    My case was not much different than yours and my wife and I decided not to wait and look for another expert and start all over with biopsies and etc.

    Please, do not go online for information since it is misleading from one side and sometimes it seems that only people without success that post something. Try to avoid the Internet at any cost and concentrate on you and your doctors.

    Focus on your case and on your treatment since each case is a totaly different case from the other and all of them have absolute chance of cure.

    One week, ten days wait for a decision where to go is on thing, more than that you should not wait. The faster you move the faster you will be free from that.

    Paul from Florida
  • jcthomas
    jcthomas Member Posts: 15
    #5
    Seems like a long time to me
    I had a biopsy in 1995 and within two weeks I knew the results and started treatment. Was a sarcoma in leg muscle.
  • needhelpnow
    needhelpnow Member Posts: 1
    #6
    jcthomas said:

    Seems like a long time to me
    I had a biopsy in 1995 and within two weeks I knew the results and started treatment. Was a sarcoma in leg muscle.

    Your post
    I saw you were diagnosed in 1995 and appear to be going strong - great news.
    My wife was diagnosed with high grade stage 3 sarcoma in her leg. She has gone through radiation and then removal and reconstruction of her leg. Now they want to begin chemo even though scans of pelvis and lungs are clear. Dr.s say about 6% chance of chemo reducing the reoccurance rate of 30-40%. Chemo will be in 3 treatments (of 5 days each)over 9 weeks. Not sure we want to do this. WIfe is otherwise a healthy mid-50 year old. Any thoughts
  • lfrankva
    lfrankva Member Posts: 4
    #7
    needhelpnow said:

    Your post
    I saw you were diagnosed in 1995 and appear to be going strong - great news.
    My wife was diagnosed with high grade stage 3 sarcoma in her leg. She has gone through radiation and then removal and reconstruction of her leg. Now they want to begin chemo even though scans of pelvis and lungs are clear. Dr.s say about 6% chance of chemo reducing the reoccurance rate of 30-40%. Chemo will be in 3 treatments (of 5 days each)over 9 weeks. Not sure we want to do this. WIfe is otherwise a healthy mid-50 year old. Any thoughts

    Chemo
    I had a high grade, stage 3, 15 cm sarcoma removed from my shoulder. As a precaution, because the biopsy was inconclusive, I also had limb sparing surgery. I had a proximal humeral replacement done. Prior to surgery I had radiation and after surgery I had chemo. It was rough. I was scheduled for 4 rounds-5 days at a time. I was lucky that I didn't have to be admitted to a hospital for my chemo, my dr. could do it in his infusion center.
    I felt like crap after round 2, I had 6 blood transfusions and 2 platelet transfusions. I never made it to round 4. I would do it again. The chemo was unlikely to kill me and to thwart the chance of having the beast come back was worth it. I need to be here on many levels.
    I'm 49, was 48 at diagnosis, overweight but quite healthy. Until this I had never had any surgery, never broke a bone and never called in sick to work.
    If I can say one thing good about the whole experience, my husband was awesome. He rarely left my side and he took care of everything. His employer was great as well - allowing him to be awesome.

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