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Uterine Sarcoma Uterine Sarcoma

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Unread 08-10-2004, 06:14 PM
Uterine Sarcoma

I was diagnosed with a Malignant Mixed Mullerian Tumor - also known as a form of Uterine Sarcoma in March 2004. I had a complete hysterectomy and 40 lymph nodes removed. 11 of the 40 lymph nodes were cancerous. I have been on chemotherapy for 4 months. I have another 2 cycles of chemo then 2 months of external radiation. Last month I had my first CAT scans and there was no evidence of cancer, which means my oncology surgeon got it all. The problem is there could still be microscopic cells floating around - hence the reason for the chemo and radiation. Despite the fact that the statistics for this disease look bleak, my oncologist tells me that my condition is manageable. That there are many effective treatments for this disease and that it may not come back (although in most cases it usually does). He said that cure is possible. My reasons for posting to this board are (1) to tell those diagnosed with uterine sarcomas to not get distraught when they read the bleak statistics (2) to invite anyone dealing with this rare form of cancer to talk about it with me. (3) I am planning to develop a web page dedicated to those of us who are struggling with this illness.

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Unread 08-10-2004, 07:55 PM
Uterine Sarcoma


I was diagnosed with a Tlc IC Grade III highly malignant fast growing tumor in my uterus in April, 2004. I also had a complete hysterectomy and 23 lymph modes removed. Mine was contained to within 1mm of the uterine wall . I am just finishing up with 25 radiation treatments on my pelvic area. Then I have to have 3 Brachytherapy treatments in the vagina . I am kind of scared of this. I wasn't even going to do the radiation treatments but 3 doctors all told me the same thing. I've been struggling with weight loss due to diarrhea and upset stomach and hemorroids.

I would like to know if anyone has had the Brachytherapy?

Unread 08-10-2004, 09:08 PM
Uterine Sarcoma

I had 3 internal treatments following 28 external treatments. My internal treatment was completed the last week in November. Although these treatment were a bit uncomfortable and more time consuming than the ex, there were little if any side effects from them.
I too had some bowel issues and a very alien bladder for mpnths mfollowing the external , the internal treatment did not seem to cause further problems. It has been eight months and I now am clear of any bladder problems. I do have some days with bowel urgency, but not often.
I had my lastest follow up with my gyn/onc today and all was AOK. I was worried about everything and am so relieved. WHEEE.
Of all that has been done so far the internal is by far the easiest. You can do it.
Good Luck
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Unread 08-10-2004, 09:52 PM
Uterine Sarcoma

I also have a rare kind of cancer called PEComa Sarcoma. There are groups on Yahoo that have your type of sarcoma . I have done allot of research on Sarcoma and I also say don't believe the statistics. There are women on Yahoo who have been living with different types of sarcoma's for a very long time. No doctor knows when it's your time to go. Only the good Lord does. I wish there was a group for PEComa but since there are only 14 cases world wide documented there aren't. I did find one person who has a advanced stage of PEcoma. It didn't start in the uterus like mine did. So I still don't have anything to go by. I am on the ESS and the LMs group on Yahoo . I feel like I don't belong to either.I do have a question for you? Is your doctor a sarcoma specialist? I was also told that this type of cancer travels through the blood stream. I am so glad your Ct scan was clear . I just had one and mine also was clear. I didn't have any follow up treatment just TVH and I have my ovaries still. My mitotic rate was none and my tumor didn't look maglinant. Although with my type they don't know how it's going to act. So I am having check ups every three months,chest exray and Ct every six months. I am seeing a Ob/Onc who is talking with a sarcoma specialist at MD Anderson. Let me know when your site is up I'd love to stop by. Take Care.

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