Spindle Cell Sarcoma

aphelps9
aphelps9 Member Posts: 2
edited March 2014 in Sarcoma #1
I am 18 years old and about a week ago I got what I had been told was a small cyst removed from my left shoulder. Today the surgeon told me it was a malignant spindle cell tumor but only about 2.5cm big. He refered me to a surgical oncologist and told me that the outlook should be pretty good since the tumore was so small. He also mentioned that when he was removing it he noticed that it looked abnormal so he removed more of the surrounding tissue than would usually be removed. I'm trying to stay positive but this is all really sudden. Does anyone have any information on this type of cancer caught early? I know that this cancer often reoccures in the lungs. Should I be worried since my first tumor was so close to that area? This is all really scary, but I'm hoping for the best since the tumor was so little and caught so soon.

If anyone has any stories about this I'd be glad to hear. I read somewhere that the survival rate is less than 5 years after the discovery of tumors for this cancer. Is this true?

Thanks so much.

Comments

  • Ma64
    Ma64 Member Posts: 15
    #2
    Spindle Cell Sarcoma
    It is really scarey. Surround yourself with people who will help you keep the positive attitude and not bring you down. The survial rate MAY be less than 5% for stage IV sarcomas. With that being said you are NOT stage IV! Keeping a positive and "I will kick cancer's @$$" attitude really helps you get through each day! It is something that you have to wake up and tell yourself each morning.
    I am so happy that yours was caught so early! The chance of the tumor spreading is much less when caught at an early stage. Has yours been staged yet? or is it still at pathology being analyzed?
    I was diagnosed at age 43 (2 years ago). Mine was located in my left knee. It was stage III and the size of a softball! It erroded a hole in my femur and required a total knee replacement and repacement of 9 inches of my femor! I went thru radiation to shrink it before surgery and just finished chemo for it. Mine recurred in my surgical leg about 9 months after surgery. Right now there are no active sarcoma cells!

    Your doctor will have you follow up on a regular basis...keep these appts! In the span of 3 months I went from cancer free to having multiple tumors. Early detection is the key to successful treatment. Ask your doctors questions. Write them down so you don't forget. I usually take one for the doctor to look at and one for myself.

    Here are some web sites with more info. (if you haven't already visited them)

    http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

    http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page1#Keypoint1

    http://www.mayoclinic.com/health/soft-tissue-sarcoma/DS00601

    I know I sound like a mom...well I am! I have a son your age! You are young and strong...that is something you have going for you.
    Stay positive. I will pray for you. Good luck!
  • aphelps9
    aphelps9 Member Posts: 2
    #3
    Ma64 said:

    Spindle Cell Sarcoma
    It is really scarey. Surround yourself with people who will help you keep the positive attitude and not bring you down. The survial rate MAY be less than 5% for stage IV sarcomas. With that being said you are NOT stage IV! Keeping a positive and "I will kick cancer's @$$" attitude really helps you get through each day! It is something that you have to wake up and tell yourself each morning.
    I am so happy that yours was caught so early! The chance of the tumor spreading is much less when caught at an early stage. Has yours been staged yet? or is it still at pathology being analyzed?
    I was diagnosed at age 43 (2 years ago). Mine was located in my left knee. It was stage III and the size of a softball! It erroded a hole in my femur and required a total knee replacement and repacement of 9 inches of my femor! I went thru radiation to shrink it before surgery and just finished chemo for it. Mine recurred in my surgical leg about 9 months after surgery. Right now there are no active sarcoma cells!

    Your doctor will have you follow up on a regular basis...keep these appts! In the span of 3 months I went from cancer free to having multiple tumors. Early detection is the key to successful treatment. Ask your doctors questions. Write them down so you don't forget. I usually take one for the doctor to look at and one for myself.

    Here are some web sites with more info. (if you haven't already visited them)

    http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

    http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page1#Keypoint1

    http://www.mayoclinic.com/health/soft-tissue-sarcoma/DS00601

    I know I sound like a mom...well I am! I have a son your age! You are young and strong...that is something you have going for you.
    Stay positive. I will pray for you. Good luck!

    I haven't been staged yet,
    I haven't been staged yet, pathology is still waiting to come back. But it's nice to hear from someone who's been through the same thing. When you hear the word "cancer" you suddenly start thinking extremes, examples where people have died in the matter of months. Not being too informed, it's nice to know about all the stages and see that there ARE plenty of survivors. Thanks for all the links too, I really appreciate it! You too will stay in my thoughts and prayers.

    Thanks again!
  • Ma64
    Ma64 Member Posts: 15
    #4
    aphelps9 said:

    I haven't been staged yet,
    I haven't been staged yet, pathology is still waiting to come back. But it's nice to hear from someone who's been through the same thing. When you hear the word "cancer" you suddenly start thinking extremes, examples where people have died in the matter of months. Not being too informed, it's nice to know about all the stages and see that there ARE plenty of survivors. Thanks for all the links too, I really appreciate it! You too will stay in my thoughts and prayers.

    Thanks again!

    Staging of Spindle Cell
    I'm glad I was able to help. Keep me posted. You can email me if you like gsmeyers92@aol.com Put "Sarcoma" in the subject line.
    Praying your news is good!
  • SJMAC
    SJMAC Member Posts: 3
    #5
    Ma64 said:

    Spindle Cell Sarcoma
    It is really scarey. Surround yourself with people who will help you keep the positive attitude and not bring you down. The survial rate MAY be less than 5% for stage IV sarcomas. With that being said you are NOT stage IV! Keeping a positive and "I will kick cancer's @$$" attitude really helps you get through each day! It is something that you have to wake up and tell yourself each morning.
    I am so happy that yours was caught so early! The chance of the tumor spreading is much less when caught at an early stage. Has yours been staged yet? or is it still at pathology being analyzed?
    I was diagnosed at age 43 (2 years ago). Mine was located in my left knee. It was stage III and the size of a softball! It erroded a hole in my femur and required a total knee replacement and repacement of 9 inches of my femor! I went thru radiation to shrink it before surgery and just finished chemo for it. Mine recurred in my surgical leg about 9 months after surgery. Right now there are no active sarcoma cells!

    Your doctor will have you follow up on a regular basis...keep these appts! In the span of 3 months I went from cancer free to having multiple tumors. Early detection is the key to successful treatment. Ask your doctors questions. Write them down so you don't forget. I usually take one for the doctor to look at and one for myself.

    Here are some web sites with more info. (if you haven't already visited them)

    http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

    http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page1#Keypoint1

    http://www.mayoclinic.com/health/soft-tissue-sarcoma/DS00601

    I know I sound like a mom...well I am! I have a son your age! You are young and strong...that is something you have going for you.
    Stay positive. I will pray for you. Good luck!

    Ma64

    I had a somewhat similiar situation. I was diagnosed with Stage 3 SC Sarcoma in my right thigh in Oct 07 and it recurred in my lung in 09. Thanks for posting the referral sites. Thank goodness I was diagnosed at John Hopkins (Dr Frank Frassica), he saved my life i think or at least my leg.
  • imhappy
    imhappy Member Posts: 3
    #6
    aphelps9 said:

    I haven't been staged yet,
    I haven't been staged yet, pathology is still waiting to come back. But it's nice to hear from someone who's been through the same thing. When you hear the word "cancer" you suddenly start thinking extremes, examples where people have died in the matter of months. Not being too informed, it's nice to know about all the stages and see that there ARE plenty of survivors. Thanks for all the links too, I really appreciate it! You too will stay in my thoughts and prayers.

    Thanks again!

    Cottage cheese flax seed protocol
    I saw your post and just wanted to send a comment to you in hopes it will prove helpful or be something you have been looking for.

    There is a website called healingcancernaturally.com actually there are many that talk about the cottage cheese/flax seed protocol.

    Johanna Budwig.. there are many protocols on that website,
    I have a friend that has spindle cell sarcoma? I have another friend that was cured two years ago and is still living from pancreatic cancer stage IV, his sister died from it years ago.

    I apologize for the briefness. Hopefully when I get more time, I will be able to write more.

    If you read up on this protocol and have questions you can feel free to email me. ALso, if you are interested the organic golden whole flaxseed (not the oil) mixed with low fat cottage cheese in a coffee grinder and eaten within ten minutes.

    That along with the special diet and the restrictions are crucial to success of healing from cancer.
  • tishbeck
    tishbeck Member Posts: 3
    #7
    SJMAC said:

    Ma64

    I had a somewhat similiar situation. I was diagnosed with Stage 3 SC Sarcoma in my right thigh in Oct 07 and it recurred in my lung in 09. Thanks for posting the referral sites. Thank goodness I was diagnosed at John Hopkins (Dr Frank Frassica), he saved my life i think or at least my leg.

    lung cancer
    what did they do about the cancer in your lungs? I have been fighting cacer off and on for six years. Three times reoccuring in my left thigh. We are watching the lungs closely, next appoitment this week (every four months now).
  • tishbeck
    tishbeck Member Posts: 3
    #8
    Ma64 said:

    Spindle Cell Sarcoma
    It is really scarey. Surround yourself with people who will help you keep the positive attitude and not bring you down. The survial rate MAY be less than 5% for stage IV sarcomas. With that being said you are NOT stage IV! Keeping a positive and "I will kick cancer's @$$" attitude really helps you get through each day! It is something that you have to wake up and tell yourself each morning.
    I am so happy that yours was caught so early! The chance of the tumor spreading is much less when caught at an early stage. Has yours been staged yet? or is it still at pathology being analyzed?
    I was diagnosed at age 43 (2 years ago). Mine was located in my left knee. It was stage III and the size of a softball! It erroded a hole in my femur and required a total knee replacement and repacement of 9 inches of my femor! I went thru radiation to shrink it before surgery and just finished chemo for it. Mine recurred in my surgical leg about 9 months after surgery. Right now there are no active sarcoma cells!

    Your doctor will have you follow up on a regular basis...keep these appts! In the span of 3 months I went from cancer free to having multiple tumors. Early detection is the key to successful treatment. Ask your doctors questions. Write them down so you don't forget. I usually take one for the doctor to look at and one for myself.

    Here are some web sites with more info. (if you haven't already visited them)

    http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

    http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page1#Keypoint1

    http://www.mayoclinic.com/health/soft-tissue-sarcoma/DS00601

    I know I sound like a mom...well I am! I have a son your age! You are young and strong...that is something you have going for you.
    Stay positive. I will pray for you. Good luck!

    me too
    Hi, I was diagnosed at age 42 (six years ago). Mine was in my left thigh. It has returned three times over the last six years. We have done chemo, radiation, and brachy therapy. I will return for my four month check up this week. Wishing you good health. It's nice to share with people who have struggled with the same illness. Good luck!
  • aykt36
    aykt36 Member Posts: 28
    #9
    thanks
    thanks



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