Leiomyosarcoma (Uterine) -

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Leiomyosarcoma (Uterine) -

by locomare on Mon Sep 17, 2007 12:00 AM

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HI,

6/06 I was diagnosed was a 4 cm fiborid.

8/29/07 I went to surgery for a partial hysterectomy due to the enlarged fibroid. Dr. found an 12cm sarcoma within a 18x27cm fibroid. Dr. had an OBGYBN/Oncologist join the surgery and they did a total abdominal and took some lymph nodes as well, although they were healthy.

Stage 1
Grade 3
Tumor was negative for estrogen receptors
Positive for invasion of myometrial veins
Mitoses 9-50/10

CT Scan was performed and no other tumors were found.

My oncologist is recommending immediate abdominal radiation treatment and chemo consisting of Doxorubicin(Adriamycin)/Ifosfomide. Has anyone received these?

Everything I have read says chemo treatments don't work as a preventative measure only if it has already spread and will just damage me prematurely. Where would you go for a 2nd opinion? I am in Oregon.

ANY ADVICE WOULD BE GREATLY APPRECIATED.

Thanks,

KC

 

RE: Leiomyosarcoma (Uterine) -

by yavall on Mon Sep 17, 2007 12:00 AM

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You should get a 2nd opinion from a sarcoma center. Md Anderson in Houston I hear is good. Theres also a place in Boston. I suggest surfing the net and try to find something close by. There may be a place in SanDiego or SanFransico.

RE: Leiomyosarcoma (Uterine) -

by warrior1 on Sat Apr 26, 2008 12:00 AM

Quote | Reply

 

On 9/17/2007 locomare wrote:

HI,

6/06 I was diagnosed was a 4 cm fiborid.

8/29/07 I went to surgery for a partial hysterectomy due to the enlarged fibroid. Dr. found an 12cm sarcoma within a 18x27cm fibroid. Dr. had an OBGYBN/Oncologist join the surgery and they did a total abdominal and took some lymph nodes as well, although they were healthy.

Stage 1
Grade 3
Tumor was negative for estrogen receptors
Positive for invasion of myometrial veins
Mitoses 9-50/10

CT Scan was performed and no other tumors were found.

My oncologist is recommending immediate abdominal radiation treatment and chemo consisting of Doxorubicin(Adriamycin)/Ifosfomide. Has anyone received these?

Everything I have read says chemo treatments don't work as a preventative measure only if it has already spread and will just damage me prematurely. Where would you go for a 2nd opinion? I am in Oregon.

ANY ADVICE WOULD BE GREATLY APPRECIATED.

Thanks,

KC

 


I know I am a little late in responding to your message, and you have probably already made your decision, but I thought I would still drop you a line and tell you a little bit about me.

I was diagnosed with ULMS in 1993, and had adjuvant chemo of Doxorubicin(Adriamycin)/Ifosfomide like you mentioned above.  I told my doctor to "give me as much as you can, and I will deal with it."  Well, he did.  I had the maximum dose of both of these.  It was hard, but I did not have any recurrence for almost 8 years.  He told me at the start if I made it to 1 1/2 - 2 years my chances would go up a lot.  I am now in the 15th year of recovery/survival.

I never gave up and have been known to disagree with a doctor or two...<grin>.  I believe in being very proactive in my own healthcare, and working closely with my doctors'. 

I also thoroughly believe in surgery vs leaving tumors in and just watching them.  I have had a lot of tumors, and a lot of surgeries.  I believe in "ah, a tumor - take it out!!"  I am going to try and not "talk" too much here, so will just leave it at that.

This is very rare cancer, but I am here to encourage you to fight, listen to yourself, do everything you can to survive.  I have.  It is worth it. 

If you have any questions, please drop me a private note and I will be happy to respond.  I hope you are doing okay. 

Take care,

 B

 

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