Lung Sarcoma

chinarapids
chinarapids Member Posts: 1
edited March 2014 in Sarcoma #1
I was diagnosed in 11/05 with a primary tumor in my left lung. I am currently undergoing chemo to shrink the tumor for possible surgery. I have been told this is a very rare site for sarcoma and wonder if anyone has had any experience with this? It is rhabdomyosarcoma, sorry if I didn't spell that right, and usually kids get it not 49 year olds. They are unsure about my prognosis but try to compare it to 14-18 year olds which is 60% survival at 5 years if you do not consider the plueral effusion as stage 4. The cancer did not spread to the pluera until after the diagnosis so I and my oncologist still consider myself at Stage 3B. I have been unable to find any information regarding this type of tumor in the lung and my chances. It has been shrinking with the chemo which is a good thing but they are talking about a year's worth of chemo. Anybody had any experience with rhabdomyosarcoma?

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    You may want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with your questions. They can be reached at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of this page.

    I wish you the best on your treatment.

    Take care and be well,

    Dana
    CSN Dana
  • DonC
    DonC Member Posts: 3
    #3
    Hey Chinarapids,

    I have had liposarcoma show up in my lungs after I had a large tumor removed from my upper left back. The tumors in my lungs were small, about the size of a dime or nickel. I had 2 surgeries a year apart to remove them. Surgery is the only thing that they have told me would be the treatment. What chemo are you taking that is shrink? I pray for your treatment to be effective.

    Thanks,
    DonC
  • sarcomasister
    sarcomasister Member Posts: 7
    #4
    DonC said:

    Hey Chinarapids,

    I have had liposarcoma show up in my lungs after I had a large tumor removed from my upper left back. The tumors in my lungs were small, about the size of a dime or nickel. I had 2 surgeries a year apart to remove them. Surgery is the only thing that they have told me would be the treatment. What chemo are you taking that is shrink? I pray for your treatment to be effective.

    Thanks,
    DonC

    Lung sarcoma surgery
    I'm wondering who did your surgery/where? How are you doing now?
  • busyrach
    busyrach Member Posts: 4
    #5
    Sarcoma
    The Sarcoma Alliance group is a great online group to join. The communication is done through email. All questions are researched, answers are usually found. Most likely there is somebody on the email list group that has had a particulat type of Sarcoma. I find the email group very helpful. Rachel (Sarcoma patient also)
  • staley
    staley Member Posts: 1
    #6
    busyrach said:

    Sarcoma
    The Sarcoma Alliance group is a great online group to join. The communication is done through email. All questions are researched, answers are usually found. Most likely there is somebody on the email list group that has had a particulat type of Sarcoma. I find the email group very helpful. Rachel (Sarcoma patient also)

    sarcoma
    Hello,

    I dont want to scare you, please remember that all sarcomas are diff.

    I just lost my husband to a reallly rare type of lung sarcoma. His was a epithelioid sarcoma of the lung. They had never heard of this type in the lung before. They removed his whole left lung. By the time they found out what type it was it took 3 weeks, the cancer had spread to his aorta. Which ment it was now in his blood stream. they took all of the sarcoma out at that time. At that time he started treatments, he had 6 rad treatments. Within weeks it covered his heart. He fought really hard to the end and it all went so fast. I am 7 months pregnant with out first child together, he was only 31. He lived 3 months with this, but once again DONT GIVE UP!! Keep all the stories in your heart and prove to yourself that you can do it!!

    good luck and god bless.
  • gemleeus
    gemleeus Member Posts: 1
    #7
    staley said:

    sarcoma
    Hello,

    I dont want to scare you, please remember that all sarcomas are diff.

    I just lost my husband to a reallly rare type of lung sarcoma. His was a epithelioid sarcoma of the lung. They had never heard of this type in the lung before. They removed his whole left lung. By the time they found out what type it was it took 3 weeks, the cancer had spread to his aorta. Which ment it was now in his blood stream. they took all of the sarcoma out at that time. At that time he started treatments, he had 6 rad treatments. Within weeks it covered his heart. He fought really hard to the end and it all went so fast. I am 7 months pregnant with out first child together, he was only 31. He lived 3 months with this, but once again DONT GIVE UP!! Keep all the stories in your heart and prove to yourself that you can do it!!

    good luck and god bless.

    TEST

    TEST
  • HETOUCHEDME
    HETOUCHEDME Member Posts: 1
    #8
    DonC said:

    Hey Chinarapids,

    I have had liposarcoma show up in my lungs after I had a large tumor removed from my upper left back. The tumors in my lungs were small, about the size of a dime or nickel. I had 2 surgeries a year apart to remove them. Surgery is the only thing that they have told me would be the treatment. What chemo are you taking that is shrink? I pray for your treatment to be effective.

    Thanks,
    DonC

    THIS IS NOW HAPPENING TO ME HOW ARE YOU DOING?
    PLEASE LET ME KNOW HOW THINGS ARE.
  • joehoag
    joehoag Member Posts: 1
    edited January 2020 #9
    lyomyosarcoma of the lung

    My wife was diagnosed with a very rare Epithelioid Lyomyosarcoma in her left lung in 2010.  A thorcotomy and removoal of the lower lobe of the lung were performed to remove the tumor.  There was no follow up therapy of any kind and she has been cancer free for these ten years.  Mayo clinic did the diagnosis though second opinions from M.D. Anderson in Houston as well as Vanderbilt in Nashville did not concur.  The tumor did not metastisize nor cross the pleurals.but was detected only because it occluded an artery and caused severe bloody coughing.  Thank God for that bleeding!  As best I can investigate this type of tumor usually originates in the uterus but this one was primary in the lung.  Less than 100 cases are documented in the literature; best I can tell.

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