Unclassified High Grade Left Iliopsoas Sarcoma

Jessie622
Jessie622 Member Posts: 7
in Sarcoma #1
I was recently diagnosis with a 10cm High Grade Unclassified Retroperitoneal Sarcoma. The plan is to do 2 rounds of chemo in hopes that it shrinks down in order to remove it. I have read that chemo does not always work and was wondering, if so, how long does it take to know if it does. I read some post stating the others are having larger sarcoma already removed. I just want the mass taken out already. Anyone know of someone with an unclassifed high grade retroperitoneal sarcoma? I would like to hear their situation and what protocol was used. This is super rare and hope someone has some insite.

Comments

  • Chanteuz
    Chanteuz Member Posts: 6
    #2
    Ewings Sarcoma
    I have a similar situation but mine was classified like Ewings Sarcoma, though it looks like liposarcoma on an MRI. It was in the right side pelvis, retroperitoneal area. Size of a lemon. They just went in and removed it! Surgically. Now, chemo.... I'm wondering why your doctors don't take it out??????
  • Chanteuz
    Chanteuz Member Posts: 6
    #3
    Chanteuz said:

    Ewings Sarcoma
    I have a similar situation but mine was classified like Ewings Sarcoma, though it looks like liposarcoma on an MRI. It was in the right side pelvis, retroperitoneal area. Size of a lemon. They just went in and removed it! Surgically. Now, chemo.... I'm wondering why your doctors don't take it out??????

    Ewings Sarcoma
    Jessie; Mine is super rare as well.....Please ask about surgery
  • Chanteuz
    Chanteuz Member Posts: 6
    #4
    Chanteuz said:

    Ewings Sarcoma
    I have a similar situation but mine was classified like Ewings Sarcoma, though it looks like liposarcoma on an MRI. It was in the right side pelvis, retroperitoneal area. Size of a lemon. They just went in and removed it! Surgically. Now, chemo.... I'm wondering why your doctors don't take it out??????

    Ewings Sarcoma
    Jessie; Mine is super rare as well.....Please ask about surgery
  • Jessie622
    Jessie622 Member Posts: 7
    #5
    Chanteuz said:

    Ewings Sarcoma
    Jessie; Mine is super rare as well.....Please ask about surgery

    Surgery
    I asked my Oncologist this past Friday why not surgery now. He talked with the Sarcoma Team at MD Anderson and they recommended to try to shrink it down before surgery. He said it was too major of a surgery now. It may be because my tumor is pretty aggressive and has a lot of blood flow to it. I am going to see a surgeon on Wedneday and see what he says.
  • Jessie622
    Jessie622 Member Posts: 7
    #6
    Chanteuz said:

    Ewings Sarcoma
    Jessie; Mine is super rare as well.....Please ask about surgery

    Surgery
    Chanteuz

    How was your surgery? How long was the surgery and recovery time?
  • bmscan
    bmscan Member Posts: 37
    #7
    Jessie622 said:

    Surgery
    Chanteuz

    How was your surgery? How long was the surgery and recovery time?

    Always Different, But Similar...
    I have had a few surgeries since 1998. 8 tumors in all. All but the last surgery were two to four days in the hospital and then a couple of weeks off followed by a couple of weeks part time... Then back to full time back to work.
    I wrote a longer explaination on one of these titled messages named: "Liposarcoma: 10 Years, 7 Tumors, And New Technology… Beating the Odds!"

    As for the last surgery, it was near the artery into my left leg. They did radiation prior to surgery. Dissimmilar to other tumors this one was difficult to remove, and I had post operative bleeding due to damage to that artery. ...Think this is why they want it shrunk some before operating on you. To do less damage in removal. It wasn't as big as yours (golf ball size).

    Whatever, you can get through it. Have patience with the medical profession, but keep on them. Good luck.
  • sarcogal49
    sarcogal49 Member Posts: 3
    edited March 2019 #8
    exact same thing!!

    I am your sarcoma twin! My surg to remove tumor was 8/3 md anderson 2nd opinion 9/5 said high grade unclassified sarcoma it was growing from left femoral nerve in the iliopsoas compartment 5 cm sandwiched between iliacus and psoas abutting the descending colon. I was told no chemo or radiation for now as all visible tumor was removed, just wait and watch with ct scans every 4 months x 2 years for local recurrence. You and i are 2 of the 10 people in the US diagnosed with retroperitoneal unclassified sarcoma according to dr raphael poolock at md anderson they see the most cases of all sarcomas. Lets stayg in touch. If you to email me directly its (content removed by CSN).

  • Jessie622
    Jessie622 Member Posts: 7
    #9
    sarcogal49 said:

    exact same thing!!

    I am your sarcoma twin! My surg to remove tumor was 8/3 md anderson 2nd opinion 9/5 said high grade unclassified sarcoma it was growing from left femoral nerve in the iliopsoas compartment 5 cm sandwiched between iliacus and psoas abutting the descending colon. I was told no chemo or radiation for now as all visible tumor was removed, just wait and watch with ct scans every 4 months x 2 years for local recurrence. You and i are 2 of the 10 people in the US diagnosed with retroperitoneal unclassified sarcoma according to dr raphael poolock at md anderson they see the most cases of all sarcomas. Lets stayg in touch. If you to email me directly its (content removed by CSN).

    Wow aren't we special :)

    Did they ever say what was so unclassifed? What was it made of? I sent you a email too.
  • sarcogal49
    sarcogal49 Member Posts: 3
    edited March 2019 #10
    Jessie622 said:

    Wow aren't we special :)

    Did they ever say what was so unclassifed? What was it made of? I sent you a email too.

    to my sarcopal

    They cant tell thats why they call these unclassified. It doesnt exactly fit any known type for example mine looked a lot like myxofibrosarcoma type b lacked the pleomorphic (spiraling shape like van goghs starry night) cells typical forthat type. I didnt find your email ill check my sla Spam folder but please send me another as this id like to talk off forum find out more detail where u are treating etc email (content removed by CSN).

  • sarcogal49
    sarcogal49 Member Posts: 3
    edited March 2019 #11
    Jessie622 said:

    Wow aren't we special :)

    Did they ever say what was so unclassifed? What was it made of? I sent you a email too.

    to my sarcopal

    They cant tell thats why they call these unclassified. It doesnt exactly fit any known type for example mine looked a lot like myxofibrosarcoma type b lacked the pleomorphic (spiraling shape like van goghs starry night) cells typical forthat type. I didnt find your email ill check my sla Spam folder but please send me another as this id like to talk off forum find out more detail where u are treating etc email (content removed by CSN).

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