Possible Diagnosis of a Spindle Cell Sarcoma, need info and reassurance

KarinBench
KarinBench Member Posts: 1
edited March 2014 in Sarcoma #1
My name is Karin and I am 44 years old. 7 years ago I was diagnosed with Hodgkins Lymphoma and underwent 6 months of chemo and have been cancer free since. About a month and a half ago I felt a lump in my right upper arm and the first thought I had was a Hodgkin's relapse. I had an MRI which was suspicious so my Onc sent me to a surgeon who removed the lump on May 7. To this date I still have no definite dx. The biopsy was just sent out for a third opinion to Hershey Pennsylvania to a pathologist who specializes in mesenchymal neoplasms. The possible diagnosis on the first 2 opinions is "Atypical Spindle Cell Sarcoma." I have not been able to find hardly any information on this cancer. I am wondering if anyone else has any info or even has had this cancer. I would be grateful for just about any information right now. I have been able to find a lot of info on sarcomas but not much on this type of sarcoma. My onc did say it is a very rare cancer. They say I have to have radical surgery to have all margins removed, the tumor affected 2 muscles, 1 nerve, couple blood vessels and was attached to my humerus. I see that surgeon on June 12. This is extremely scary for me, I am beginning to think that a Hodgkins relapse would have been much, much better.



Looking for information............anything.

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    #2
    Dear Karin,
    We encourage
    Dear Karin,

    We encourage you to call our National Cancer Information Center at 1-800-227-2345. We have cancer information specialists available around the clock. They might be able to provide you with information about this type of cancer.

    Be well,
    Your CSN Staff
  • 16yearspouse
    16yearspouse Member Posts: 1
    #3
    Possibe Sarcoma
    Karin my heart goes out to you for the double whammy you have had. My husband had a soft tissue sarcoma in his upper right thigh. During his 13 1/2 hour surgery it was discovered the tumor encased his sciatic nerve and they opted to do a hemi pelvectomy (very radical margins)wherein everything from the right pelvic bone was removed including the hip. I want to give you hope He is still alive sixteen years cancer free this past March. Not only healthy but full of crap like a husband of 20 years should be. He did not have much luck with prostetics and is a holy terror on crutches and when using his wheelchair. I hope you have good luck in your recovery and hope to hear about your subsequent treatment. I'm glad they caught it. My husband's grew from a golfball to a loaf of bread in three weeks.
  • AABoldt
    AABoldt Member Posts: 5
    #4
    Just Had Experience with a Spindle Cell Tumor
    Hi Karin,

    In May, I had a Spindle Cell Tumor and a small margin of the surrounding tissue removed from my right groin area. My oncologist told me Spindle Cell Tumors are categorized as a sarcoma and are very rare, solitary, encapsulated and fibrous tumors, usually found in the lungs. They can be found in the extremities as well. He said they do not classify it as either benign or malignant because 1.) Their behavior is very unpredictable and 2.) It is so rare. There isn’t much data available on it. My oncologist had to consult with his mentor in St. Louis who specializes in sarcomas and sits on a national panel/board because it was the first one he had seen. He ran the pathology (immunohistochemical analysis to confirm the diagnosis) by him and they decided that they needed to take out a larger margin, another centimeter, which I went right back in for 3 weeks later. The second pathology came up clean and my oncologist is keeping a close eye on me; he requested visits every 4 months for the first year. I was told that if it were to return, it would be in the same spot.

    However, now I have found another mass in my right breast, which feels very much like the one above - hard and marble-like. I went back in to the oncologist Monday and we're starting the whole process again...mammogram/sonogram/ultrasound and then to see the breast surgeon next week for biopsy and discuss whether surgery is necessary.

    3 years ago, I was diagnosed with Premature Ovarian Failure at the age of 32. I was told one doesn't have anything to do with the other, but I still wonder. Does anyone know anything about hormone dependent cancer?

    It scares me that there is very little data on Spindle Cell Sarcoma, especially now that I have another mass...just a month later. If anyone else has information on this subject, please include me in your correspondence.

    Thank you!
  • SADIESQUEEN
    SADIESQUEEN Member Posts: 1
    #5
    KARIN'S QUESTIONS
    I TOO HAVE BEEN RECENTLY DIAGNOSED WITH GIST, SPINDLE CELL SARCOMA, AND KNOW NOTHING ABOUT IT REALLY. DIAGNOSED AFTER SURGERY ON 8-25, I AM SEEING AN ONCOLOGIST SPECIALIZING IN GIST AND I LIVE IN HOUSTON, MDA HOSP. HAS A TRIAL STUDY I HOPE TO JOIN, WILL BE EVALUATED BY DR. TRENT ON 10-15-09. I'LL LET YOU KNOW WHAT HAPPENS IF YOU DO THE SAME!
  • dfrank
    dfrank Member Posts: 5
    #6
    Spindle Cell Sarcoma
    4 years ago my wife Mary had a lumpectomy and it was diagnosed as Spindle Cell Sarcoma, very rare in the Breast. She just underwent a mastectomy as she had a re-occurrence in the same breast, in the same area with a tumor that grew to 3 cm in less then 6 months. Now just 10 weeks later they found a large mass at the base of the lung and two spots additional spots on the outside of the lung and they are also Spindle Cell Sarcoma. We are looking for Doctor's with experience in this area, Studies, Trials, etc to help us with this battle. She is now at the Cleveland Clinic were they have removed a portion of the tumor that had grown into the airway to give her lung capacity until we find a solution. Please forward this to anyone that might be able to help or give us some input on were or who to contact.
    Don dfrank330@aol.com
  • lovelifeforever
    lovelifeforever Member Posts: 11
    #7
    dfrank said:

    Spindle Cell Sarcoma
    4 years ago my wife Mary had a lumpectomy and it was diagnosed as Spindle Cell Sarcoma, very rare in the Breast. She just underwent a mastectomy as she had a re-occurrence in the same breast, in the same area with a tumor that grew to 3 cm in less then 6 months. Now just 10 weeks later they found a large mass at the base of the lung and two spots additional spots on the outside of the lung and they are also Spindle Cell Sarcoma. We are looking for Doctor's with experience in this area, Studies, Trials, etc to help us with this battle. She is now at the Cleveland Clinic were they have removed a portion of the tumor that had grown into the airway to give her lung capacity until we find a solution. Please forward this to anyone that might be able to help or give us some input on were or who to contact.
    Don dfrank330@aol.com

    spindle cell sarcoma
    Hello dfrank. Best wishes to your wife and encouraging for you and your wife.

    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 which(according to the doc) unknown if it will work. I am so worry about this agreesive treament and the side effect for my mom's body. I dont know whether her body can affort that. After reading ur story, since you have 4 years experiences to help your wife to fight fot this cancer. I will be very greatful if your could give me any suggestions or helps.

    Looking forward to your reply. Best wishes and good luck to your wife.

    you can also contact me by ven_622@hotmail.com
  • jmorin81
    jmorin81 Member Posts: 2
    #8
    AABoldt said:

    Just Had Experience with a Spindle Cell Tumor
    Hi Karin,

    In May, I had a Spindle Cell Tumor and a small margin of the surrounding tissue removed from my right groin area. My oncologist told me Spindle Cell Tumors are categorized as a sarcoma and are very rare, solitary, encapsulated and fibrous tumors, usually found in the lungs. They can be found in the extremities as well. He said they do not classify it as either benign or malignant because 1.) Their behavior is very unpredictable and 2.) It is so rare. There isn’t much data available on it. My oncologist had to consult with his mentor in St. Louis who specializes in sarcomas and sits on a national panel/board because it was the first one he had seen. He ran the pathology (immunohistochemical analysis to confirm the diagnosis) by him and they decided that they needed to take out a larger margin, another centimeter, which I went right back in for 3 weeks later. The second pathology came up clean and my oncologist is keeping a close eye on me; he requested visits every 4 months for the first year. I was told that if it were to return, it would be in the same spot.

    However, now I have found another mass in my right breast, which feels very much like the one above - hard and marble-like. I went back in to the oncologist Monday and we're starting the whole process again...mammogram/sonogram/ultrasound and then to see the breast surgeon next week for biopsy and discuss whether surgery is necessary.

    3 years ago, I was diagnosed with Premature Ovarian Failure at the age of 32. I was told one doesn't have anything to do with the other, but I still wonder. Does anyone know anything about hormone dependent cancer?

    It scares me that there is very little data on Spindle Cell Sarcoma, especially now that I have another mass...just a month later. If anyone else has information on this subject, please include me in your correspondence.

    Thank you!

    I have had a similar issue
    I have had a similar issue as you. In 2008 I had a tumor removed from my right groin area. Turned out to be a spindle cell tumor and it was about half a pound. It was sent to Harvard and I was told it was benign and there was a slim to none chance it would return. Well a couple of months ago I noticed a lump in the same area. Long story short, the tumor returned and I just had it removed yesterday. I would love to receive more info from you because I was told it was benign, but you were given different information. Can you email me or respond on this post? I don't know what to do. I am 28 years old, female, and typically very healthy. I am wondering if I should be more worried about this, especially since the tumor came back in a fairly short amount of time.
  • 1dd
    1dd Member Posts: 1
    #9
    jmorin81 said:

    I have had a similar issue
    I have had a similar issue as you. In 2008 I had a tumor removed from my right groin area. Turned out to be a spindle cell tumor and it was about half a pound. It was sent to Harvard and I was told it was benign and there was a slim to none chance it would return. Well a couple of months ago I noticed a lump in the same area. Long story short, the tumor returned and I just had it removed yesterday. I would love to receive more info from you because I was told it was benign, but you were given different information. Can you email me or respond on this post? I don't know what to do. I am 28 years old, female, and typically very healthy. I am wondering if I should be more worried about this, especially since the tumor came back in a fairly short amount of time.

    spindle cell neoplasm
    HI: How are you doing now? What was the treatment they gave you after the tumor was removed first time, as my relative has a similar case as yours and the lump was removed from the groin area. Any advice and ideas about the treatment and side effects will be very helpful. Report says it is spindle cell neoplasm. Was that the case in your situation? Pls. advise. Thanks
  • jcrim999
    jcrim999 Member Posts: 1
    #10
    Anaplastic Spindle Cell Neoplasm

    My mom was diagnosed with Anaplastic Spindle Cell Neoplasm.  She is 7 years recovered from rectal cancer and the doctor says that has caused this cancer to show up in her pelvis area.  I do not see much information on this type of cancer.  The doctor has suggested chemo if they cant remove the tumor my means of surgery. 

    If anyone has experience with this cancer please let me know.

    Thanks in advance.

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