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Leiomyosarcoma (LMS) Leiomyosarcoma (LMS)

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Unread 09-27-2002, 11:06 AM
Leiomyosarcoma (LMS)

I had an emerg total hysterectomy in July. I was on a wait list for one, but my pain and bleeding turned into hemorraging and pain that required morphine. I was in the ER twice in the same week. The operation went fine, recovery was a piece of cake - back at work within a week. And then the phone call came. They found a high grade tumour in the muscle of my uterus. It has a big name, leiomyosarcoma - only 1% of cancers are this type. Surgery is the main line of attack and then we wait to see what might happen. No chemo, no radiation. I go every 3 months for testing for what I hope will be years to come. Has anyone else had this type of cancer? I would be interested in hearing from you if you did.
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Unread 09-27-2002, 06:08 PM
Leiomyosarcoma (LMS)

Hi Savana

I must be honest with you and say, I have no idea about this type of tumor. I will tell you that someone will be along shortly.
We have so many ladies and different types of cancers and tumors I am sure someone will know.
For now I will wish you the best, and good luck.
Please let us know how things are comung along.
Unread 09-27-2002, 06:42 PM
Leiomyosarcoma (LMS)

s Savana

Wow!!! It sounds like your emergency hysterectomy was just what you needed. And it all happened in a more timely fashion for you. Unfortunately I am not that familiar with your type of cancer either. Did you try a google search?
Best wishes to you and make you sure you keep all of those three month followup appts!!!

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Unread 09-28-2002, 06:14 AM
Leiomyosarcoma (LMS)

Hi, Savana!
I am a leiomyosarcoma survivor. I continue on the 3 month plan as well. My tumor was also high grade. I am a year plus post op and doing very well. You're right about the course of treatment....surgery, go in and get the darn thing out! I take Megestrol (Megace) daily. It has anti-neoplastic agents in it. My oncologist doesn't know if it will help but we are giving it a try anyway. I am also on vitamins (antioxidants, etc). It's very important to have a good immune system, that's really for fighting any disease! I have had 2 PET scans the past year to see if the cancer had spread or recurred. Nothing found! Yeah! You might want to run a search here with my name or leiomyosarcoma for further information.

Let me know if you have further questions or if I can be of help to you. You've come to a great place for support.
Unread 09-28-2002, 11:19 AM
thanks for the posts

Thanks for the posts. I registered on a cancer site and no one ever responds to anyone it seems. So this is nice to be on a board where people acknowledge one another.
Unread 09-28-2002, 02:23 PM

Hi Savana,

Leiomyosarcomas are fibroid tumors (aka leiomyomas) that have become cancerous (sarcoma). Statistically, fibroid tumors become cancerous in less than 1 percent of cases, however, this was another good reason I wanted my very large one out...you always think what if? The DRs seem to think this is a low rate but when its you it might as well be 100%. This is why women with fibroids should be monitored closely by their DR for growth rate...a significant amount of growth in a short period of time may be due to a change in status.

It may be a good idea for you to consult with a gynecological oncologist for your 2nd or 3rd opinion. I pray that you are healed and don't have any further trouble with this.

Best wishes,

Unread 10-02-2002, 07:29 AM
no radiation or chemo?

I want to ask Margie what I asked Savana: I'm curious why your doctors didn't recommend radiation or chemo. I had a large, high-grade vaginal LMS. It was removed with wide, clear margins. But I'm still doing radiation and preparing for chemo.
Unread 10-02-2002, 06:10 PM
Leiomyosarcoma (LMS)

Hi, RareOne,
Yes, LMS is a rare one, too!!! There is not much research on this bugger and what to do in each case is very individualized. In my case, the tumor was easily resected and localized. I was told by both oncologists from 2 different cancer centers, to give me chemo would be making me sick when they weren't sure if it was even necessary. Not really a great answer but my research revealed that chemo for me would not be effective. Radiation would also not be effective accept to burn up my intestines since they would be shooting in the dark!

I don't think I was much help to you but I would ask questions of your doctors to make sure what you need to go through will provide you with extended quality of life.
Unread 10-02-2002, 07:35 PM
thanks, margie!

In the next month or two, I'm going to M.D. Anderson Cancer Center in Houston for a second opinion. I hope they recommend against chemo! (And then I'll make up my own mind, of course.)
Unread 10-03-2002, 10:01 AM


I also was diagnosed with LMS at the end of June after a TAH due to a large fast growing fibroid tumor. My gynocologist was extremely surprised when the diagonsis came back with the pathology report. He only had two other patients in his 25 years of gyn-ob practice. The oncolgist I was referred was grim at first stating it was high grade and he was concerned that there was necrosis. However, my first CT scan and chest x-ray in September was clear. Now he is very optomistic that there will not be a reoccurrance. I will be having a pelvic exam every three months and CT scans and chest x-rays every six months for the next two years. The oncologist stated that if it hasn't shown up in the next two years I should be home free. I will have much to celebrate on my 60th birthday. I was also told that chemo and radiation was not felt to be helpful at this stage. Although he did state that he had treated two women this year with high doses of chemo once it had spread to the lungs and that the chemo had been successful.

Stay positive,
It is difficult to find much information on the web on LMS. what is there is mostly geared for the medical profession. If everyone else has more information to share, it would be much appreciated.


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