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Uterine Carcinosarcoma (also called MMMT) -- guidance/insight appreciated!!!!!!!!

Maria_in_So_Cal
Posts: 2
Joined: Jul 2014

New to this board -- it's so inspirational to hear all these stories of courage and survival. My 66-year-old mom has recently been diagnosed with Stage 3B uterine carcinosarcoma (or MMMT). She has had a full-stomach hyst. and most of the tumor has been removed, though there are still small pebbles in her pelvic lining. I'm doing as much research as I can -- I've read that this type of cancer was originally thought to take on the characteristics of a sarcoma, but that more recently, this thinking has shifted and that there is not real consensus regarding a "gold standard" for treatment (even all the more reason to educate ourselves!). My mom has gone to her gyno oncologist/surgeon, but he seems inexperienced and tentative (with this type of cancer) -- not yet certain of what chemo/radiation to give her. We are getting a second opinion at the UCLA sarcoma center, with an interdisciplinary team that includes a sarcoma specialist, medical oncologist, and radiation specialist. If anyone knows of an "expert" in this type of cancer in California could you let me know? Or, if you can recommend the TYPE of specialist that you have found most insightful, that would be helpful too! I've yet to find someone who has a great deal of experience in this space, and I'm not sure the sarcoma specialist is the way to go, though UCLA seems to have way more intellectual capital/resources at their disposal, which is comforting. Also, from everything I have read/experienced, I would encourage everyone to get a second and maybe third opinion and to consider going to an interdisciplinary team so that you have "expertise" on multiple fronts. Thank you all for sharing your stories -- it's comforting to know we are not alone.: )

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2802
Joined: Mar 2013

Maria, there are some wonderful women here who can tell you way more about MMMT than me and I am glad to hear you are getting a second opinion.  While MMMT is rare, and very agressive, there are women here who have dealt with this.  It is a holiday weekend, so it might be a little slow here on the board, but take a breath.  Your mother is lucky to have you find us and ask any questions of the group.

Kaleena's picture
Kaleena
Posts: 2033
Joined: Nov 2009

Maria,

So sorry to hear that your mom and you have to go through this.    But you are right, if you feel that your mom isn't getting the answers or feel uneasy about her medical care giver, then by all means seek a second opinion.  Although I don't have MMMT (they had to rule it out), I was diagnosed with Endometrial Adenocarcinoma Grade 2 Stage 3a.    Believe me, after my original doctor retired, I ended up seeking a third and fourth opinion and have changed physicians a couple of times and now travel a great distance for my medical care.   As I am from Pennsylvania, I am not familiar with or know of anyone from California that I can refer you to.

Just watch what you read on the internet.  So many of the treatments, etc., are outdated and can be scary because they are based on old facts and circumstances.   You may want to find a medical doctor that you have a good relationship with to ask him/her who they would suggest and then go from there.   Also, once you get the names of a physician, do a check on them from the computer just as a reference.

Your mom is lucky to have you to be her advocate.   You and your mom have to take charge.  No one else will.   Even the best surgeon or medical team.  They are busy and have thousands of patients, so you have to help them out.   My rule of thumb is this:  If they do not let my husband come back with me, if they wont answer my questions, if they just give me tests, etc., without explaining, or if I feel that I am just another number, then I seek another physician.  But thats just me.

My best to you and your mom.

Kathy

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

Did your mom's gyn onc suggest the second opinion at UCLA?  I would definitely seek out a major academic medical center for a second opinion because they are a think tank.  If the team you're seeing isn't the right one, they should know who is.  Lots to chose from in southern California (I'm in Northern CA) - UCLA, USC, City of Hope, UC Irvine, UCSD, etc., etc.  These folks typically know each other and know who's doing what where.  There should be some women here who had a similar diagnosis and can be more helpful.  You might want to contact these guys http://www.foundationforwomenscancer.org/ for a recommendation. ..

Suzanne

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Maria, you're Mom is so fortunate to have your assistance. Kathy, Suzanne and NTFC have given you great information. I am sorry you had to find us here but this is a wonderful source of comfort and information. We have women here who have been treated for carcinosarcoma and I suspect you will hear from them as well. I have another rare and aggressive uterine cancer called UPSC (Stage 3A). There is a "standard of care" in the treatment of all cancers based on type, subtype, stage and grade. The National Comprehensive Cancer Network -NCCN- publishes treatment guidelines for the various cancers which is evidence -that is research-based . When I reviewed the treatment recommendations for stage 3 UPSC, it recommends surgery, chemotherapy plus or minus radiation treatment. I no longer read research studies on the internet as much of the information is outdated. Don't give up hope! No one knows why some women survive stage 4 uterine cancer while others with stage 1 do not. My gyne/oncologist told me that recently. We are all different and so is the cancer we are dealing with. Seeking a second or even a third or more opinions is a good idea, too, and it looks like you are doing just that. I live in a small town in eastern Florida so I can't give you any suggestions in California.

Best wishes to you and your mother,

Cathy

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