Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Sulana on Wed Sep 19, 2007 12:00 AM
My mother was diagonsed with Stage 3 MMMT cancer two years ago. She is 50 years old. We have no family of history of any type of cancer on both sides of her parents. It came completely out of the blue. She had a hysterectomy which revealed three large masses: one in her uterus and one on each ovary, and she had some peritoneal seeding. Her Ca-125 was in the 500's. She recieved 6 months worth of carboplatin-paclitaxol, and we thought we were in the clear. after 7 months of rigorous testing, monitoring, with CT scans and the like, we found two nodes popped up: one in her paraaortic lymph node and one paradiaphragmatic lymph node. She started chemo therapy once more because the PET scan proved they were positive for growth and they appeared to be growing. She started a new drug called Doxil (liposomal Doxirubicin). After two sessions of that, a third lymph node popped up under her armpit (the axilla), and after much testing, we just today found that to be positive for breat cancer. Her CA-125 level is 17. I am 25 years old and my CA-125 lever is 17. I do not have cancer and my mother does. I am a medical student and know that CA-126 is a nonspecific marker that can be found in the body, and happens to increase in alot of women with ovarian cancer, but can also be increased with inflammation and sickness and the like. I was just wondering if anyone else had a story similar to mine., While I am familiar with alof of aspects of medicine, MMMT is an EXTREMELY rare cancer type and there are not alot of studies on it. I know the prognosis is poor, but I don't know how poor. I do not know how many years I have with my mother, especially due to the recurrence and the addition of a new cancer type. Is this common (to have a new cancer grow on top of an old one?) I just wanted to get my story out there, and I'm crossing my fingers that someone can share some information with me or that I have helped someone in some way. Looking forward to responses, ~Sulana.
by Christiane on Thu Sep 20, 2007 12:00 AM
My 64 year old mother was diagnosed with a stage 3C ovarian carcinosarcoma or MMMT in June of 2007. She just finished the third of 6 chemo treatments - ifosfomide and cysplatin. My mom never had particularly high CA 125 readings prior to surgery - it was 35 at that time. Her ovarian carcinosarcoma actually produced some blood test results that mimicked lymphoma which threw the doctors off for a while.
We do have cancer in our family - colon cancer - and there can be a genetic link between colon and ovarian cancer just as there is a genetic link between some breast cancer and ovarian cancer. We have not had the genetic profiling done yet, but we intend to.
There is a yahoo group that discusses uterine and ovarian carcinosarcoma issues, and you can turn to them with some of your questions. You are correct - the prognosis for women with advanced ovarian carcinosarcoma is not good, but there are women in remission out there as well as women who have overcome multiple forms of cancer. Best of luck to you, your family and your mom.
Christiane in OR
by Silverado on Wed Oct 03, 2007 12:00 AM
I am 32 with stage 4B MMMT of the uterus.
My cancer markers including my CA125 were all normal, with the exception of my HDL which was 385.
My oncologist said that this form of cancer does NOT have any readable cancer markers, unless it is in ovarian form, then the CA125 is helpful.
And because it is a mixed tumor, it can show up again anywhere. I've had to have bone scans and CT scans etc. I have no doubt that if they did some staining of the cells in her breast cancer, they would find cells that had MMMT characteristics.
If her MMMT is platinum resistant, then her oncologist should find another treatment option.
by Kehoops on Wed Jan 02, 2008 12:00 AM
Come visit us as the Uterine/Ovarian MMMT/Adenosarcoma support group. You will need to request permission to enter, but permission is generally granted pretty fast.
by CynthiaAB on Fri Jan 11, 2008 12:00 AM
My mother was diagnosed with MMMT - uterine in 1987. We had her with us January 2000. She did have a reoccurence in the area of her spine in 1994, I think.
So even though it is an aggressive cancer which I thought meant "quick" I personally changed that definite to mean "it won't really go away".
I myself am a breast cancer survivor having been diagnosed and treated in 2001. No one has ever suggested there is a relationship between Mom's MMMT and my breast cancer, though.
by ChancesAreNil on Wed Nov 19, 2008 12:00 AM
On 1/11/2008 CynthiaAB wrote:My mother was diagnosed with MMMT - uterine in 1987. We had her with us January 2000. She did have a reoccurence in the area of her spine in 1994, I think. So even though it is an aggressive cancer which I thought meant "quick" I personally changed that definite to mean "it won't really go away". I myself am a breast cancer survivor having been diagnosed and treated in 2001. No one has ever suggested there is a relationship between Mom's MMMT and my breast cancer, though.
Your mom survived MMMT for 13 years????
I was just diagnosed with this monster and from all I read very few ever survive longer then 2-5 years if that.
This really gives us all some hope. Can you tell us anything more, like her staging when diagnosed , treatments. Canada or U.S?
Thank you so very much.
by Steve_NV on Fri Sep 18, 2009 12:00 AM
Just found this post. To help others who are looking for info on MMMT here are a couple links.
Join the group at:
for up to the minute info, answers and support.
Look at my website: http://gynommmt.wordpress.com
Hope this helps.
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