high grade spindle cell sarcoma

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  • jpcolorado626
    jpcolorado626 Member Posts: 1
    #22
    lovelifeforever said:

    asking for treament options spindle cell sarcoma
    Best wishes and good luck to everyone here.

    My mom was diagnosed with Spindle cell Sarcoma in the upper part of her left lung on Dec 2009 and had a surgery to remove the whloe left part on feb 2010. 3 months after her surgery she had her first CT scan and the result shows that there are new lesions appeared on her right lung and pancreas. The doc suggested for the chemo treament but he is not sure if it works. I am so worry about this agreesive treament and the side effect for my mom's body. She is 50 years old and I dont know whether her body can affort that.

    I am here asking for any useful information and suggestions. I will be very greatful if anyone could give me any suggestions or helps.

    Thank you again.

    I need help too!
    My 17 yr old son was diagnosed with high grade, stage 4 spindle cell sarcoma (synovial maybe?) 5 days ago at Denver Children's Hospital. He has a 8mm x 5 mm x 5mm tumor in right chest that has spread to both lungs internally and lung walls also. They have still not positively identified it as synovial and need one more day (slow). I requested 2nd opinion and they are sending to Dr Christopher Fletcher in Boston (noted above). My sister (MD) also wanted to send to Mayo, but they said no need. Advice? I am starting to doubt Denver as the pathologist said in 25 yrs never seen this type and other unknowns that make me uncomfortable. Are they any good at Sarcoma (I've been told HAVE TO HAVE Sarcoma expert treating). I will move with my son anywhere to the best Sarcoma treatment expert if needed to improve his chances. Who and where are they PLEASE! Is Denver good enough? Do they know Sarcoma and Spindle Cell? He's my only son and he is so wonderful! I can't lose him and will do anything to improve his chances (Denver says 30-40%, true? Better or worse?) Obviously, we are so scared. Please advise to all. Thank you!
  • Nitoalsh
    Nitoalsh Member Posts: 2
    #23
    jpcolorado626 said:

    I need help too!
    My 17 yr old son was diagnosed with high grade, stage 4 spindle cell sarcoma (synovial maybe?) 5 days ago at Denver Children's Hospital. He has a 8mm x 5 mm x 5mm tumor in right chest that has spread to both lungs internally and lung walls also. They have still not positively identified it as synovial and need one more day (slow). I requested 2nd opinion and they are sending to Dr Christopher Fletcher in Boston (noted above). My sister (MD) also wanted to send to Mayo, but they said no need. Advice? I am starting to doubt Denver as the pathologist said in 25 yrs never seen this type and other unknowns that make me uncomfortable. Are they any good at Sarcoma (I've been told HAVE TO HAVE Sarcoma expert treating). I will move with my son anywhere to the best Sarcoma treatment expert if needed to improve his chances. Who and where are they PLEASE! Is Denver good enough? Do they know Sarcoma and Spindle Cell? He's my only son and he is so wonderful! I can't lose him and will do anything to improve his chances (Denver says 30-40%, true? Better or worse?) Obviously, we are so scared. Please advise to all. Thank you!

    Help
    Dr. Fletcher also diagnosed my sarcoma. Good move. Mayo in Minn. does have a good sarcoma center as does MD Anderson in Houston.

    I am being treated at the University of Nebraska Medical Center in Omaha.

    Don't settle for anything less than expert.
  • mrcolorado
    mrcolorado Member Posts: 2
    #24
    jpcolorado626 said:

    I need help too!
    My 17 yr old son was diagnosed with high grade, stage 4 spindle cell sarcoma (synovial maybe?) 5 days ago at Denver Children's Hospital. He has a 8mm x 5 mm x 5mm tumor in right chest that has spread to both lungs internally and lung walls also. They have still not positively identified it as synovial and need one more day (slow). I requested 2nd opinion and they are sending to Dr Christopher Fletcher in Boston (noted above). My sister (MD) also wanted to send to Mayo, but they said no need. Advice? I am starting to doubt Denver as the pathologist said in 25 yrs never seen this type and other unknowns that make me uncomfortable. Are they any good at Sarcoma (I've been told HAVE TO HAVE Sarcoma expert treating). I will move with my son anywhere to the best Sarcoma treatment expert if needed to improve his chances. Who and where are they PLEASE! Is Denver good enough? Do they know Sarcoma and Spindle Cell? He's my only son and he is so wonderful! I can't lose him and will do anything to improve his chances (Denver says 30-40%, true? Better or worse?) Obviously, we are so scared. Please advise to all. Thank you!

    Sarcoma Experts
    I can tell you the folks at Duke are experts with Sarcoma. They have a Sarcoma center.

    But any well respected cancer center that specializes in Sarcoma will do - Mayo Clinic, Duke, UNC, Wake Forest, etc.

    My surgery went well and I have a lot more of my voice back than they thought I'd have. Radiation was fairly easy (I ate at Outback Steakhouse my last week) hahaha.

    Good look to you!

    Will
  • ez4ted
    ez4ted Member Posts: 2
    #25
    kwatkins said:

    keep strong
    Hi Cara, I read about your mother and i am so sorry.This Cancer is sooo scary and i hope pamela is alive and well.I have a posting on sarcomas w/ subject age 40 liposarcoma if you want to read mine. But today i was told my dr. in janesviile, wi sent my slides to clevland and they came back saying i have spindle cell sarcoma unclassified. Now im so confused cause uw madison,wi. said it was liposarcoma. now i dont know where to get a second opinion and who is good w/ sarcoma cancers?this **** is crazy. it sounds like it can crop up anywhere anytime. I am 40 and scared to death with not much support at home. God bless you and watch over your mom. take care kelly

    Hi KWatkins
    I know Houston is a long way from Wisconsin but, they are unbelievable. I had my tumor removed at a local hospital (Orange,TX). The doctor thought it was a fatty tumor and said the odds of it being malignant were about 1 in 2 billion. In the recovery room, he said it looked odd and was sending it off for biopsy. Six days later he called to tell me it was malignant and he was referring me to MD Anderson. It was classified as a spindle cell sarcoma. My oncologist cleared the margins around where the tumor was on 7/13/2010. I did not receive chemotherapy or radiation treatments. My leg is returning to normal, still a little numbness. I know how very fortunate I am but, I think MD Anderson is THE place to go. I pray you get the help you need and enjoy a long and healthy life!
  • ez4ted
    ez4ted Member Posts: 2
    #26
    jpcolorado626 said:

    I need help too!
    My 17 yr old son was diagnosed with high grade, stage 4 spindle cell sarcoma (synovial maybe?) 5 days ago at Denver Children's Hospital. He has a 8mm x 5 mm x 5mm tumor in right chest that has spread to both lungs internally and lung walls also. They have still not positively identified it as synovial and need one more day (slow). I requested 2nd opinion and they are sending to Dr Christopher Fletcher in Boston (noted above). My sister (MD) also wanted to send to Mayo, but they said no need. Advice? I am starting to doubt Denver as the pathologist said in 25 yrs never seen this type and other unknowns that make me uncomfortable. Are they any good at Sarcoma (I've been told HAVE TO HAVE Sarcoma expert treating). I will move with my son anywhere to the best Sarcoma treatment expert if needed to improve his chances. Who and where are they PLEASE! Is Denver good enough? Do they know Sarcoma and Spindle Cell? He's my only son and he is so wonderful! I can't lose him and will do anything to improve his chances (Denver says 30-40%, true? Better or worse?) Obviously, we are so scared. Please advise to all. Thank you!

    Hi jpcolorado
    I had another post here. I don't know much about other cancer treatment centers but, I recommend MD Anderson in Houston. My surgeon was Dr. Patrick Lin and I can not say enough about him and his staff. The Sarcoma Dept. and MD Anderson, as a whole, are just amazing. I never met an MD Anderson employee that was anything but pleasant and a joy to be around. It was a very uplifting experience.
  • obie1203
    obie1203 Member Posts: 8
    #27
    jpcolorado626 said:

    I need help too!
    My 17 yr old son was diagnosed with high grade, stage 4 spindle cell sarcoma (synovial maybe?) 5 days ago at Denver Children's Hospital. He has a 8mm x 5 mm x 5mm tumor in right chest that has spread to both lungs internally and lung walls also. They have still not positively identified it as synovial and need one more day (slow). I requested 2nd opinion and they are sending to Dr Christopher Fletcher in Boston (noted above). My sister (MD) also wanted to send to Mayo, but they said no need. Advice? I am starting to doubt Denver as the pathologist said in 25 yrs never seen this type and other unknowns that make me uncomfortable. Are they any good at Sarcoma (I've been told HAVE TO HAVE Sarcoma expert treating). I will move with my son anywhere to the best Sarcoma treatment expert if needed to improve his chances. Who and where are they PLEASE! Is Denver good enough? Do they know Sarcoma and Spindle Cell? He's my only son and he is so wonderful! I can't lose him and will do anything to improve his chances (Denver says 30-40%, true? Better or worse?) Obviously, we are so scared. Please advise to all. Thank you!

    My 17 year old son too!


    It is my first time on this website and my 17 year old son was also just diagnosed with primary synovial sarcoma of his right lung. We are all devastated by this news but they feel they have gotten all of the lesion out and it was less than 1cm. We have taken him to Memorial Sloan Kettering in NYC to see Doctor Wexlor, and I have also taken him to Doctor Maki at Mt. Sinai in NYC who came from Sloan. These doctors have also been in touch with St. Judes regading my son (Doctor Sheri Spunt).

    As a mother, I feel the pain and desperation in your post (I am desperate myself and find it hard to get through each day not knowing what the future holds for my son). I truly hope your son is OK and wish your family peace and strength to get through this.
  • sarcomakid
    sarcomakid Member Posts: 2
    #28
    jpcolorado626 said:

    I need help too!
    My 17 yr old son was diagnosed with high grade, stage 4 spindle cell sarcoma (synovial maybe?) 5 days ago at Denver Children's Hospital. He has a 8mm x 5 mm x 5mm tumor in right chest that has spread to both lungs internally and lung walls also. They have still not positively identified it as synovial and need one more day (slow). I requested 2nd opinion and they are sending to Dr Christopher Fletcher in Boston (noted above). My sister (MD) also wanted to send to Mayo, but they said no need. Advice? I am starting to doubt Denver as the pathologist said in 25 yrs never seen this type and other unknowns that make me uncomfortable. Are they any good at Sarcoma (I've been told HAVE TO HAVE Sarcoma expert treating). I will move with my son anywhere to the best Sarcoma treatment expert if needed to improve his chances. Who and where are they PLEASE! Is Denver good enough? Do they know Sarcoma and Spindle Cell? He's my only son and he is so wonderful! I can't lose him and will do anything to improve his chances (Denver says 30-40%, true? Better or worse?) Obviously, we are so scared. Please advise to all. Thank you!

    sarcoma expert in Australia??

    Hi my name is David. my 10 yr old son has a large undifferentiated spindle cell sarcoma it is between the ribs and lung it has collapsed nearly all of his lung. It is high grade 3/3 I'm in Australia at a children's hospital called westmead in sydney they have a large cancer dept. My boy had 3 ct scans 12th Dec 2nd Jan and 15th Jan and has had 2 pet scans. He has had 2 rounds of chemo which has stopped the growth which is some good news but the docs now don't think it will shrink. What is really important that I wanted to tell you is that from the 12th to the 2nd it grew alot approx 15% so I think it's important you act fast. Initially they told us that surgery would be terrible and we need to shrink it with chemo for 6 rounds but (today) now they are planning on fast tracking the surgery I think they saw something on the PET scan they did yesterday I'm still awaiting the report. Good luck x if you find any thing that you think I should look at please help. Especially any way to shrink it...

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