high grade spindle sarcoma

nennie
nennie Member Posts: 1
edited March 2014 in Sarcoma #1
my boyfriend just had surgury for a hgs sarcoma on his right shoulder...have anyone ever had this we first went for chemo.. then the surgury now he is starting radiation in a week or so.. if anyone has been thru this please e-mail

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the Personal Web Pages to see if you can find a member who has a similar experience. You can do this by clicking on Personal Web Pages on the left hand side of the screen and then putting in key words that are similar to his situation. If you find someone you would like to connect with, you can contact them through the CSN internal email system.

    I hope this information has been helpful and I hope your boyfriend does well with his treatment.

    Take care and be well,

    Dana
    CSN Dana
  • MJ1006
    MJ1006 Member Posts: 9
    #3
    Hello, I to have high grade spindle cell sarcoma,
    When I was 13 yrs. old I had hodkins lymphoma, Which in turns I was treated w/ to much radiation,
    Now 27 yrs later In 2004 I had a radical neck surgery which the diagnosed w/ high grade spindle cell sarcoma, I recieved chemo, then in April of 2005, the sarcoma returned, another surgery. Now I getting ready to undergo IMRT radiation.
    Please responsed.
    Angel34mj@aol.com
  • annettel
    annettel Member Posts: 1
    #4
    MJ1006 said:

    Hello, I to have high grade spindle cell sarcoma,
    When I was 13 yrs. old I had hodkins lymphoma, Which in turns I was treated w/ to much radiation,
    Now 27 yrs later In 2004 I had a radical neck surgery which the diagnosed w/ high grade spindle cell sarcoma, I recieved chemo, then in April of 2005, the sarcoma returned, another surgery. Now I getting ready to undergo IMRT radiation.
    Please responsed.
    Angel34mj@aol.com

    angel34mj:
    This is interesting... I have JUST been "preliminarily" diagnosed (the pathology report is not complete because of the weird stuff they're seeing) with a spindle cell sarcoma. Not quite sure what it means... but anyways, I also had Hodgkin's as a teen (17 when diagnosed).. I went through 8 months of chemo and had just celebrated my 20th anniversary of being cancer free this past summer. I'm hoping that we can email more and compare notes once I receive a more definitive diagnosis. This is the scariest thing I've ever been through... Hodgkin's,although it was scary, also brought with it the comfort of knowing it was treatable/curable.... I don't know what this spindle cell sarcoma brings..
    - Annette
  • nikmissie
    nikmissie Member Posts: 1
    #5
    annettel said:

    angel34mj:
    This is interesting... I have JUST been "preliminarily" diagnosed (the pathology report is not complete because of the weird stuff they're seeing) with a spindle cell sarcoma. Not quite sure what it means... but anyways, I also had Hodgkin's as a teen (17 when diagnosed).. I went through 8 months of chemo and had just celebrated my 20th anniversary of being cancer free this past summer. I'm hoping that we can email more and compare notes once I receive a more definitive diagnosis. This is the scariest thing I've ever been through... Hodgkin's,although it was scary, also brought with it the comfort of knowing it was treatable/curable.... I don't know what this spindle cell sarcoma brings..
    - Annette

    Hi my name is Missie and I am going through what feels like a lifetime movie. My husband was fine litterly 1 second and then the next collapsed (he couldn't breath because of the pain he had in his chest) I called an ambulance and they took him to a hospital who then diagnosed him with a collapsed lung. They did an mri to find out that it was not a collapsed lung it was in fact a spindle cell tumor the size of a softball in the plural space between his lungs and ribs (about one inch from his aorta) This thing was bleeding aroung his lung compessing his left one ( which the lower loeb is now collapsed. We are currently in the hospital he has under gone 1 biopsy all ready but it has the patholagist baffled, he has to do a second one tomorrow they need more tissue. They say it is cancer contained with in the tumor they just can not figure out what kind of cancer it is. One thing the sergeon keeps saying is that she is thinking it is a sarcoma of some sort (wich meens nothing to me) They speak I kind of try to follow( it is so confusing and life altering. My husbands pain is growing uncontrollingly that is why we are here. I take notes lots of notes. I would love to hear what your out come is hopefully we will have one in 3 to 3 weeks they say. I some what know how you aref eeling to know that there is somthing there but not yet fully know what it is one thing is for sure it is very scarey. May God Bless and you are in our prayers
  • lkern
    lkern Member Posts: 4
    #6
    nikmissie said:

    Hi my name is Missie and I am going through what feels like a lifetime movie. My husband was fine litterly 1 second and then the next collapsed (he couldn't breath because of the pain he had in his chest) I called an ambulance and they took him to a hospital who then diagnosed him with a collapsed lung. They did an mri to find out that it was not a collapsed lung it was in fact a spindle cell tumor the size of a softball in the plural space between his lungs and ribs (about one inch from his aorta) This thing was bleeding aroung his lung compessing his left one ( which the lower loeb is now collapsed. We are currently in the hospital he has under gone 1 biopsy all ready but it has the patholagist baffled, he has to do a second one tomorrow they need more tissue. They say it is cancer contained with in the tumor they just can not figure out what kind of cancer it is. One thing the sergeon keeps saying is that she is thinking it is a sarcoma of some sort (wich meens nothing to me) They speak I kind of try to follow( it is so confusing and life altering. My husbands pain is growing uncontrollingly that is why we are here. I take notes lots of notes. I would love to hear what your out come is hopefully we will have one in 3 to 3 weeks they say. I some what know how you aref eeling to know that there is somthing there but not yet fully know what it is one thing is for sure it is very scarey. May God Bless and you are in our prayers

    Hi, Missy. I was searching the computer for info on my cancer and saw your post. Just wondering how you husband is doing....well I pray. I was diagnosed with a retroperitoneal liposarcoma with dedefferentiatedcomponet and moderately cellular spindle cell neoplasm..high grade. It was the size of a 10#turkey as the Dr. says, and was located between my left kidney and the back muscle wall. My first surgery was in Jan 05. The only thing that was removed was the tumor. Several months after that, I decided to have my left kidney checked because it felt 'funny'. Didn't hurt, just felt full or heavy. In Nov 05 I went to see a urologist..he did CT Scan and didn't like the way it looked so I had another in Mar 06. That's when the cancer showed again. I then sought a surgical onocologist and found one that specialized in sarcomas. He removed the tumor, placed a bag filled with saline in my abdomen which pushed my insides to the right, tacked up my kidney and I had 34 radiation treatments. The area of the sarcoma as well the bottom half of my left kidney was radiated. My Dr said my second cancer tumor was not a reoccurance...but a continuation since he believes the cancer cells were in the kidney all along and should have been removed in Jan 05. Anyway, I had high hopes that I would not have to go through this again until I read these messages posted here. Seems sarcomas are notorious for reoccuring. My last PET Scan was last week and something is now in my lower left pelvic area, below the radiated area. I will have another PET Scan in March, 07 before the Dr. decides if it's 'somethin' or 'nothing'. Mean time, I'm searching the internet for nutritional info that will help fight cancer and I'm going to the health food store this week. I feel like I have to do something to help my body fight this cancer.

    Pleae let me know how your husband is doing and what's been happening to him. I will watch for you post. Thanks.
    Linda
  • sarcomakid
    sarcomakid Member Posts: 2
    #7
    nikmissie said:

    Hi my name is Missie and I am going through what feels like a lifetime movie. My husband was fine litterly 1 second and then the next collapsed (he couldn't breath because of the pain he had in his chest) I called an ambulance and they took him to a hospital who then diagnosed him with a collapsed lung. They did an mri to find out that it was not a collapsed lung it was in fact a spindle cell tumor the size of a softball in the plural space between his lungs and ribs (about one inch from his aorta) This thing was bleeding aroung his lung compessing his left one ( which the lower loeb is now collapsed. We are currently in the hospital he has under gone 1 biopsy all ready but it has the patholagist baffled, he has to do a second one tomorrow they need more tissue. They say it is cancer contained with in the tumor they just can not figure out what kind of cancer it is. One thing the sergeon keeps saying is that she is thinking it is a sarcoma of some sort (wich meens nothing to me) They speak I kind of try to follow( it is so confusing and life altering. My husbands pain is growing uncontrollingly that is why we are here. I take notes lots of notes. I would love to hear what your out come is hopefully we will have one in 3 to 3 weeks they say. I some what know how you aref eeling to know that there is somthing there but not yet fully know what it is one thing is for sure it is very scarey. May God Bless and you are in our prayers

    Hi Missy my name is David. my

    Hi Missy my name is David. my 10 yr old son has a large undifferentiated spindle cell sarcoma in a similar place it is between the ribs and lung it has collapsed nearly all of his lung. It is high grade 3/3 and he has had two rounds of chemo. I haven't posted anywhere before and this just got very real very quickly -know what you mean about being in a movie- I'm sleeping most nights in the hospital. We have been here since 12th December we are in Australia in a children's hospital called westmead. My boy had 3 ct scans 12th Dec 2nd Jan and 15th Jan and has 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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