carcinosarcoma of uterus

My mom was diagnosed with carcinosarcoma of the uterus 2 years ago.  The doctors told her that they got it all when they did a hysterectomy.  She had radiation therapy.  They didn't do a CAT scan until she complained of abdominal pain and weight loss.  Here it had spread to the esophagus.  I was so disgusted that the dr was not aggressive with her treatment initially as this is a rare aggressive cancer.  We found another doctor and he treated her with chemo and radiation.  She was fine until this week we found a spot in her liver.  Now, I am trying to find support as far as treatment and other therapies for this type of cancer.  I keep hitting a roadblock as this is a rare cancer.   Has anyone else experienced this?  They have made great strides for breast cancer--why not for rare uterine cancer? 

 

On 11/6/2008 Marielib wrote:

My mom was diagnosed with carcinosarcoma of the uterus 2 years ago.  The doctors told her that they got it all when they did a hysterectomy.  She had radiation therapy.  They didn't do a CAT scan until she complained of abdominal pain and weight loss.  Here it had spread to the esophagus.  I was so disgusted that the dr was not aggressive with her treatment initially as this is a rare aggressive cancer.  We found another doctor and he treated her with chemo and radiation.  She was fine until this week we found a spot in her liver.  Now, I am trying to find support as far as treatment and other therapies for this type of cancer.  I keep hitting a roadblock as this is a rare cancer.   Has anyone else experienced this?  They have made great strides for breast cancer--why not for rare uterine cancer? 

 

I have carcinosarcoma ...it's called MMMT...it's a very rare form of cancer...Most doctors will give you chemo plus radiation..but some doctors don't seem to believe chemo helps this particular cancer...they are wrong...when you have this cancer they need to hit it hard with everything they can..this is a " no cure cancer "

As for the strides in breast cancer and NOT this cancer?...well it is rare and I truly believe there isn't ( thank God ) enough women getting it to make it worth while for the cancer society to throw alot of money into it...

There is a wonderful support group online for MMMT   

My mom got her treatment for this disease with the drug cyclophosphamide and doxorubicin.  Those drugs are really toxic.  I hope this works.  In response to the last message, I don't think the American Cancer Society would be throwing money away for the rare cancers.  I am sorry but the research money should go to all cancers rare and common cancers.  Why should people who have rare cancers die because it is rare?  Anyway what is this support group for carcinosarcoma of the uterus?

 

On 11/18/2008 Marielib wrote:

My mom got her treatment for this disease with the drug cyclophosphamide and doxorubicin.  Those drugs are really toxic.  I hope this works.  In response to the last message, I don't think the American Cancer Society would be throwing money away for the rare cancers.  I am sorry but the research money should go to all cancers rare and common cancers.  Why should people who have rare cancers die because it is rare?  Anyway what is this support group for carcinosarcoma of the uterus?

This is the link for the support group 

http://health.groups.yahoo.com/group/UterineMMMT/

the men and women in this group are wonderful...they are patients and caretakers..and are very knowledgeable..you have to request permission to join but they are pretty fast doing that

Good luck to your mom

 

On 11/18/2008 Marielib wrote:

My mom got her treatment for this disease with the drug cyclophosphamide and doxorubicin.  Those drugs are really toxic.  I hope this works.  In response to the last message, I don't think the American Cancer Society would be throwing money away for the rare cancers.  I am sorry but the research money should go to all cancers rare and common cancers.  Why should people who have rare cancers die because it is rare?  Anyway what is this support group for carcinosarcoma of the uterus?

 

I agree with you 100% that research money should go to finding a cure for ALL cancers...I just don't think that is the way the Cancer society feels...look around all you see is a sea of pink for breast cancer ( which has a 86% cure rate )...did all the other cancers get lost along the way?????

 

On 11/6/2008 Marielib wrote:

My mom was diagnosed with carcinosarcoma of the uterus 2 years ago.  The doctors told her that they got it all when they did a hysterectomy.  She had radiation therapy.  They didn't do a CAT scan until she complained of abdominal pain and weight loss.  Here it had spread to the esophagus.  I was so disgusted that the dr was not aggressive with her treatment initially as this is a rare aggressive cancer.  We found another doctor and he treated her with chemo and radiation.  She was fine until this week we found a spot in her liver.  Now, I am trying to find support as far as treatment and other therapies for this type of cancer.  I keep hitting a roadblock as this is a rare cancer.   Has anyone else experienced this?  They have made great strides for breast cancer--why not for rare uterine cancer? 

Hi....I read your message my sis-in-law just had the surgery and she will begin Chemo but her deep wound won't heal......The entire family is so upset but we are trusting in God and the Doctors to help her,,,,,,,,I was wondering what did your moms doctors tell her about where, how, when, why she got MMMT.......And does chemo help ?????

 

Anna

This morning I was diagnosed with Malignant mixed Müllerian tumor (MMMT) or uterine  carcinosarcoma.   In your post you wrote that there is a wonderful support group online for MMMT.  I wondered if you would direct me to this group.   I live in Ontario Canada.  I will be having a complete hysterectomy and lymph node biopsies then radiation or chemo after if necessary.   I'm waiting for an appointment with an Oncologist surgeon.   This began Christmas eve with spotting that has gradually worsened.   It's been a stressful time waiting for test result.   It's a relief to have a diagosis but frightening as well.

Dear Louvaine

  somone posted the link to the mmmt group on yahoo as   http://health.groups.Yahoo.com/group/UterineMMMT

I belong to the group, started several years ago by the daughter of a woman diagnosed with uterine carcinosarcoma.  Kathy was upset and mad when she could not find current info on this rare and aggressive cancer.  There are several members who live in Canada who might be especially helpful  to you in negotiating the Canadian health care system..also lots of information and experience.  I found the group by googling almost 2 years ago I think and sure wish I had found it when I was first diagnosed in 2006.

  take care and thinking of you!

et