Leomyosarcoma

Hello:

 My sister has been diagnosed with leomyosarcoma in her lower right pelvis.  Dr.s are saying she needs to have surgery and will have to have all vital organs in that area removed to be able to extract the tumor.  She doesn't like that answer.  Does anyone have any suggestions?  Has anyone experienced this?  She has gone to the Cancer Treatment Centers of America, which does not have a sarcoma team and she has also gone through Karmanos in Detroit, MI, but has not accessed their sarcoma team.

 Any suggestions?  Any ideas on the best treatment team in the country or a specific doctor who can help?

Thanks.

I went to University of Michigan for a uterine sarcoma.  I was very pleased.  They are cutting edge with research and their gyn/onc department is outstanding. It also is a sarcoma center and they can work with the sarcoma specialist if necessary. 

I would also suggest checking out the ACOR discussion list for LMS.  It is very active and the women there are extremely knowledgeable.

 my best...

 Susan

On 5/17/2007 Cbattr wrote:

Hello:

 My sister has been diagnosed with leomyosarcoma in her lower right pelvis.  Dr.s are saying she needs to have surgery and will have to have all vital organs in that area removed to be able to extract the tumor.  She doesn't like that answer.  Does anyone have any suggestions?  Has anyone experienced this?  She has gone to the Cancer Treatment Centers of America, which does not have a sarcoma team and she has also gone through Karmanos in Detroit, MI, but has not accessed their sarcoma team.

 Any suggestions?  Any ideas on the best treatment team in the country or a specific doctor who can help?

Thanks.

 

 

That sounds pretty radical to me! I wouldn't let someone remove so many organs without a lot of research and information first!! I was diagnosed last August with Stage IV lms which had started in my uterus. My oncologist did not operate because of the number of organs with metastasis, and instead started me on a chemo regimen of gemzar and taxotere. I am also taking complementary meds., and I have to tell you, I've been doing very well.  As of my last scans, about 6 weeks ago, I'd gotten rid of the cancer in my lung, breast, liver and hip. I only had a little left in my uterus, and some in my spine.  We're now stopped the original chemo drugs to give me a chance to get back energy and get rid of side effects and are  using Femara (an estrogen suppressant) as well as Avastin (a biologic drug), and I've added a few things to my complementary arsenal, and I'm feeling wonderful.  My next scans are in June, and I plan on being cancer-free!  I've heard often enough that the MD Andersen Cancer Center in Houston is the best in the country, so you may want to contact them. They seem to be on the cutting edge of all the new cancer research and ideas. The best of luck to you. Feel free to contact me if I be of any further help!  Karen :)

Not knowing the results of the scans or other workup makes it difficult.  Was it a grade 3/highgrade or low grade(1)?  This makes a big difference.

I have had good luck getting these tumors to respond to irradiation.  In order to decrease the extent of surgery this could be done with chemo as well.  If it responds well then less extensive surgery may be possible.  With new radiation technique higher doses can be give safely.

On 5/18/2007 Kbookcat8 wrote:

 

On 5/17/2007 Cbattr wrote:

Hello:

 My sister has been diagnosed with leomyosarcoma in her lower right pelvis.  Dr.s are saying she needs to have surgery and will have to have all vital organs in that area removed to be able to extract the tumor.  She doesn't like that answer.  Does anyone have any suggestions?  Has anyone experienced this?  She has gone to the Cancer Treatment Centers of America, which does not have a sarcoma team and she has also gone through Karmanos in Detroit, MI, but has not accessed their sarcoma team.

 Any suggestions?  Any ideas on the best treatment team in the country or a specific doctor who can help?

Thanks.

 

 

That sounds pretty radical to me! I wouldn't let someone remove so many organs without a lot of research and information first!! I was diagnosed last August with Stage IV lms which had started in my uterus. My oncologist did not operate because of the number of organs with metastasis, and instead started me on a chemo regimen of gemzar and taxotere. I am also taking complementary meds., and I have to tell you, I've been doing very well.  As of my last scans, about 6 weeks ago, I'd gotten rid of the cancer in my lung, breast, liver and hip. I only had a little left in my uterus, and some in my spine.  We're now stopped the original chemo drugs to give me a chance to get back energy and get rid of side effects and are  using Femara (an estrogen suppressant) as well as Avastin (a biologic drug), and I've added a few things to my complementary arsenal, and I'm feeling wonderful.  My next scans are in June, and I plan on being cancer-free!  I've heard often enough that the MD Andersen Cancer Center in Houston is the best in the country, so you may want to contact them. They seem to be on the cutting edge of all the new cancer research and ideas. The best of luck to you. Feel free to contact me if I be of any further help!  Karen :)

Hi Karen, I am Michelle and that was my sister with the question.  I had already gone through chemo with gemzar and taxotere which did nothing for me.  I also had maid which is four drugs together.  I did go with CTCA in Zion Illinois.  I have been through surgery and radiation/tomotheray.  It was high grade stage 3, retroperitoneal mass/leimyosarcoma.  It was connected to the outer wall of the bladder and they hit a nerve on the right side when scraping to remove as much as they could.  CTCA did not remove all organs they gave me hope and only removed what they needed.  I have since had another ct and pet and am clear.  I will be going back in Febuary and as you plan to be cancer free then also.  I worry more about my family than I do myself.  I am married and have two sons who are 13 and 11.  I pray for everyone who has cancer as well as myself.  I am affected by cancer in many ways.  I have family membeers who also have or have in the past dealt with cancer of some kind.  Thank you for your email answer and I felt the same way.  NO taking something from me that I need unless there is no way around it and I can say they are kind and listen to your needs at CTCA.

thank you, michelle

Hello, Dana Farber (in Boston) has a Sarcoma Center as well --

Epiphany