Uterine Carcinosarcoma

Hi,

Last June my uterine and ovaries were removed because of MMMT found in it and microscopics cells on the Omentum and on the serosal surface of both the left and right ovaries.

I was treated with CAP 6 courses. finished at mid October.

Now CT shows spreading of the disease in the abdomin and may be interference in the pancreas.

 

Does anyone heard about treatment for this situation?

what is the best treatment in this case?

Which Clinic specializes in this case?

 

Thanks'

Dear Malka

  you can find lots of information on the yahoo mmmt forum. Best oncs that i know of are Dr Hensley at Memorial Sloan Kettering in nyc and Dr Susana Campos at Dana Farber in Boston, who are gyn oncs.  Also, Dr Gerald Rosen at St Vincents in NYC.  There are lots of folks on the yahoo forum who can tell you about great oncs in other parts of the country. 

  Your chemo seems to be one of primary txs but some women have also had radiation.

  Please join the group.  You will learn lots, including to have hope.  ET dx 12/06 uterince carcinosarcoma 3C; 1/07 TAH, etc; 2/07-5/07 carbo/taxol (6); as of 1/09 ct scan, no evidence of disease- eternally grateful           

 

 

 

want to sincerely thank the lady who replied to Malka.a womanwho posted a note about a uterine carcinosarcoma.i"d love to chat with you.your issues sound so much like mine.stage3c mmmt.diagnosed in april 2006.treatment at sloan in n.y.c.dr levine was my oncologist.5 treatments of taxol and 4 of carbo.had bad reaction to 4th dose of carbo,unable to receive any more.3 treatments of radiation prior to chemo.have one small concern presently.had 2 espisodes of very small amount of rectal bleeding.my oncolgist said i must see g.i. doctor who did exactly as i suspected he would.advised a colonoscopy.hopefully all will be o.k.but as you can readily understand one can"t help but be concerned.i"m new to this site as well as to my new computer skills.thanks so so much for info of yahoo site.so excited-will try later.if you want to be pen-pals let me no how?good luck and god bless all of us!

Dear Stayin Alive (love that name!)

  I really don't do private emailing re uterine carcinosarcoma since the yahoo message board means =getting anywhere from 10 -30  emails a day! it's really the best medium because there are so many there, any one of which may have more info or a closer experience than I do.

  There are folks from around the country and around the world, all sharing their experiences and advice.  So it would be wonderful if you were to get onboard with us that way.

  if you have a problem with getting on the  board. please let me know!

 good luck

et

dear et,thanks so much for your prompt reply to my question concerning any special sites i can chat on about mmmt of the uterus.love your name too! i did attempt this myself however,found several potential sites as well.looking into all of them would take hours at least.could you please post the exact 0n-line address.i can not express how happy i am to have found this info you posted.if this disease progresses it will mean the world to me!!my deepest gratitude.   stayin alive.

Dear SA

  I never know exactly how to get to the group, which now comes to my email direct.  but try emailing at UterineMMMT@yahoogroups.com for info and for access.

let me know if this works.  I found it by a google search over a year ago and am not sure now how i did it!

 et

dear et,have located the address of the official mmmt yahoo forum site you spoke of for uterine carcinosarcoma.i joined and am now awaiting approval of the group owner.i think it worthwhile to post it here should anyone else be interested.once again,can"t thank you enough for info.       here"s the address------http://groups.yahoo.com/group/uterine mmmt/ sincerely, stayin alive

Great! and thank you for posting the address here.  You will be amazed that there are so many women and their family and friends who are on this board, almost exclusively concerned with uterine carcinosarcoma (there are a few with other gyn carcinosarcomas, such as ovarian, fallopian tubes, etc).

There is tons of information on what treatments people are getting or have had, recommendations on particular doctors or hospitals, etc. One member, whose granddaughter is a childhood sarcoma survivor (not a gyn cancer), posts research articles on sarcomas.  And our members range from all over the US to England, Canada, Australia, and Europe, with a link currently to a woman being treated in China. 

Can't wait to have you on board!

et

Hi my older sister was recently diagnosed with Uterine Carcinosarcoma we have been trying to find a group that she can converse with but it seems nothing out there until I found this site. We went to MD Anderson for a second opinion I wanted her to see someone in the Sarcoma Department but we met with an OB Oncologist her treatmeat is Cisplatin weekly for 6 weeks along with Radiation treatment I was wondering if anyone else has been to MD Anderson for this and what treatment options are out there I am writing for my sister because she is totally blind from retinal blastoma as an infant the thought is that high doses of radiation caused the Carcinosarcoma if there is anyone out there like us we'd like to hear from you.

 

Elaine

Hi Elaine-

My older sister was just diagnosed with a Adeno Carcinosarcoma of unkown origin. I understand this to be a VERY rare aggressive cancer.  Her tumor was in her Pelvis, originally thought to be her uterus but when they went in to operate and do what was suppose to be a routine hysterectomy (They thought it was an endometreoma or a fibroid) it turned out much differently. The tumor was actually outside her uterus and wrapped around some of her bowel and rectum.  8 hours later she was wheeled into recovery with 90% of the cancer and part of her rectum removed (She now has a collostomy bag).

She too had a MD named Anderson.  I'm curious if it was the same one. Does your sister's MD work out of St. Luke's Roosevelt in NYC?  My sister is going to meet with Drs. on Tuesday to determine her treatments.

How is your sister doing? How are you doing?

Donna