Ewing sarcoma insight??please.

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Sonny1221
Sonny1221 Member Posts: 5
in Sarcoma #1

Hello my friends!i notice my left leg (femur area) started swelling in the ending of November 2011, I was a high school senior at the time, so I was doing a lot of weight training, so i didn't think to much of it, then the pain started, so i went to the hospital, they did scans and a biopsy and diagnosed me with Ewing sarcoma February of 2012 started chemo right away, did 17 cycles of intense chemo and surgery in between chemos, I finish chemo on November 23 of 2012, then when I think I'm ready to resume my regular life I noticed a small lump on my left leg on January 2 2013. Met the doctors and they want me to start all over again. My case is very weird because all the scans I did on the 21 of December 2012 showed up negative, I did a pet/ct scan of body , bone scan of body, MRI of left leg, X-ray, chest ct scan, how come these scans didn't pick up the cancerous cells? I would think if cancerous cells was still in my left leg at this point, the scans should at least pick it up? I just don't get it? Is it possible for the cancer to to recur so quick? Within 5 weeks and 3 days of last chemo? And the weird thing is I didn't even see this new lump on my leg grow it just appear over night at one size. And this isn't the first time the scans didn't pick the cancer up, it happen when my left leg started swelling back in 2011. Another thing is that the cancer came back on the negative margine which was below the inital tumor site. this is weird i dont get it, im not even a bad eater, i dont eat junk food, rarely eat fast food, exercise, it's not like if I'm putting crap into my body to feed the cancer. Please I need some insight, did these events ever  happen to anyone else? I would  appreciate if you guys can answer my questions, and get back to me thank you all, much love.

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  • maoberst
    maoberst Member Posts: 11
    #2
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    Hello Sonny1221,
    Ewing's

    Hello Sonny1221,

    Ewing's Sarcoma is nothing but a beast.  It is nastly, aggressive, and can literally appear over night.   You have done NOTHING to cause it, much less have it reappear.  Ewing Sarcoma is a cancer that is presumed to be microscopic.  Therefore, even though the cancer tumor was removed, there is a higher recurence rate than other cancers because the cancer cells are presumed to be throughout the body.  Most recurrences occur in the lungs so your case is more unique.  Your recurrence is probably considered a local recurrence.  Even though it is not in the exact spot as the original tumor, there were probably microscopic cells around the tumor that presented itself after chemo finished.  it is not unheard of to relapse so quickly.  My guess is that you will go no another chemo treatment and your surgeons will address the needs of your femur area.  I encourage you to sign up for an online Ewing Sarcoma group that is very active with all kids of patient's, parents, and even physicians.  It's a place to ask any question and you can view all the archives.  You are in great hands and you CAN beat Ewing's.  Many many people have beat it more than once.

    There are many cases where at PET or CT bone scan didn't pick up tumors.  Several people have said, they saw the lump just days after scans.  It's a beast of a disease and super aggressive so it can never be taken lightly.

    I wish you the very best of luck!

    Here is the link the ACOR Listserve Support group....

    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=E-SARCOMA

    Our daughter finished her treatment in September 2012 for Ewing's in her tibia.  You are both survivors and remember that!

    MelissaO

  • Sonny1221
    Sonny1221 Member Posts: 5
    #3
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    maoberst said:

    Hello Sonny1221,
    Ewing's

    Hello Sonny1221,

    Ewing's Sarcoma is nothing but a beast.  It is nastly, aggressive, and can literally appear over night.   You have done NOTHING to cause it, much less have it reappear.  Ewing Sarcoma is a cancer that is presumed to be microscopic.  Therefore, even though the cancer tumor was removed, there is a higher recurence rate than other cancers because the cancer cells are presumed to be throughout the body.  Most recurrences occur in the lungs so your case is more unique.  Your recurrence is probably considered a local recurrence.  Even though it is not in the exact spot as the original tumor, there were probably microscopic cells around the tumor that presented itself after chemo finished.  it is not unheard of to relapse so quickly.  My guess is that you will go no another chemo treatment and your surgeons will address the needs of your femur area.  I encourage you to sign up for an online Ewing Sarcoma group that is very active with all kids of patient's, parents, and even physicians.  It's a place to ask any question and you can view all the archives.  You are in great hands and you CAN beat Ewing's.  Many many people have beat it more than once.

    There are many cases where at PET or CT bone scan didn't pick up tumors.  Several people have said, they saw the lump just days after scans.  It's a beast of a disease and super aggressive so it can never be taken lightly.

    I wish you the very best of luck!

    Here is the link the ACOR Listserve Support group....

    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=E-SARCOMA

    Our daughter finished her treatment in September 2012 for Ewing's in her tibia.  You are both survivors and remember that!

    MelissaO

    Thanks alot for the insight

    Thanks alot for the insight Melissa. your but one of the only few who responded to me. It is indeed a teribble sickness. May god continue to bless your daughter. Best of luck with everything.

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