Soft Tisue Sarcoma

olivia38
olivia38 Member Posts: 1
edited November 2015 in Sarcoma #1

My sister, who is 38 years old, was recently diagnosed with a spindle cell sclerosing highgrade rhabdomiosarcoma on her cheek. It started as a small lump on her right cheek. She had surgery to remove the sarcoma as well as the surrounding areas. Her doctor told her the tumor was 2.5 cm. Her surgeon and the oncologist both believed that all of the tumor was resected during surgery.

Now the question remains how to move forward. Her local sarcoma oncologist does not recommend chemo at this point. He believes that sclerosing sarcoma does not respond well to chemo. Because of this she has to now undertake 25 sessions of radiotherapy.  

She had a second opinion from another sarcoma oncologist from a sarcoma clinic in Italy. This doctor suggested radiation and chemotherapy.  According to him radiation in not enough and will not alone suffice.

We are now confused and scared because they provided us different solutions for treatment. Since this is a very rare type of cancer we are seeking additional information in addition to opinions that could possibly help save her life.

Also, we have some general questions about rhabdomiosarcoma:

Is it true that if sarcoma is under 5 cm it probably will spread?

Is it true that spindle cell sarcoma usually does not metastasis?

Everywhere thus far we have searched has ended up leaving us with unanswered questions. Has anyone had similary problem?

 

 

 

Comments

  • navymom1012
    navymom1012 Member Posts: 1
    #2
    Soft Tissue Sarcoma

    My twin brother had one in his chest that was MISDIGNOSED for over six months, then the surgeons screwed up the surgery and failed to remove it the first time. He underwent radiation treatment and all was well for about six months. It came back and spread from his chest to his lungs, rib and spine. His doctor basically told him to prepare to die as chemo probably wouldn't help; he had 12 months or less to live. We took him to Rush hospital in Chicago, where the doctor treats 60 or more cases a year of sarcomas. The verdict was that chemo could buy him at least 18 months, maybe more depending on how it went. We are only past the first 6 months and his last chemo treatment was 6 weeks ago, but the tumors ARE SHRINKING! Some of them by huge amounts. He did the ifosfimide/dioxirubin combo which is supposed to be very hard on the body with a LOT of side effects. He had VIRTUALLY NO SIDE EFFECT, butS. He will NEVER be cancer free due to how much it has spread, but we are hoping to be able to control it for a long time.

     

    Go with the doctor you feel best with. Had my brother allowed us in on the medical discussions and treatment optioons AT THE BEGINNING of all this, the outcome might have been different. I am very thankful and grateful that he is doing well now, but you have to have the right doctor and treatment.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #3
    navymom1012 said:

    Soft Tissue Sarcoma

    My twin brother had one in his chest that was MISDIGNOSED for over six months, then the surgeons screwed up the surgery and failed to remove it the first time. He underwent radiation treatment and all was well for about six months. It came back and spread from his chest to his lungs, rib and spine. His doctor basically told him to prepare to die as chemo probably wouldn't help; he had 12 months or less to live. We took him to Rush hospital in Chicago, where the doctor treats 60 or more cases a year of sarcomas. The verdict was that chemo could buy him at least 18 months, maybe more depending on how it went. We are only past the first 6 months and his last chemo treatment was 6 weeks ago, but the tumors ARE SHRINKING! Some of them by huge amounts. He did the ifosfimide/dioxirubin combo which is supposed to be very hard on the body with a LOT of side effects. He had VIRTUALLY NO SIDE EFFECT, butS. He will NEVER be cancer free due to how much it has spread, but we are hoping to be able to control it for a long time.

     

    Go with the doctor you feel best with. Had my brother allowed us in on the medical discussions and treatment optioons AT THE BEGINNING of all this, the outcome might have been different. I am very thankful and grateful that he is doing well now, but you have to have the right doctor and treatment.

    navymom, this is the second

    navymom, this is the second time I have heard something good about Rush hospital in Chicago.  Good to know. 

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