Uterine Carcinosarcoma, any survivors out there?

txtrisha55 said:

For me, I was DX after a D&C

For me, I was DX after a D&C for heavy bleeding after being post menapausal since I was 93-94. ( 36 at the time).  In 2011 I started having heavy bleeding and my gyn dr suggested a D&C.  After that I was called on the phone to be told that there were MMMT cells found in the pathology report.  She made the appoinment with the Gyn Onc. Dr here in Dallas at the UT SW Cancer Center and found me the best dr.  So had D&C March 25, April 1 called to tell me cancer.  Apr 4 first appointment with gyn onc dr and full abdominal surgery April 8.  Port (just one if you are having chemo, it will help save your veins) Chemo started May 8 for 6 treatments every 21 days of carbo taxol.  Last treatment Aug 22, 2011.  No radiation.  It has now been 4 years.  Number one thing for me was a postitive attitude.  If you have taxol you will lose your hair, it will grow back, I looked on it as a good thing and did not let it freak me out.  There are some ladies that it did bother and that is ok too, they get wigs, scarves, hats.  Me, I just learned how to shave my head bald and went on about my life.  I went to work bald, went shopping bald, went to plays and grandson's activities bald.  I had bad days and great days during chemo.  But life does get back to a new normal. You can change your whole way of life by reading the anti cancer books, changing your eating habits, start execising.  Lots of ladies have.  My attitude was OK I have cancer, lets deal with it. Get it out and then move to the next phase. Get through the chemo, whats next.  Living your life.  This is doable and you will find out how strong you are and you will get through this.  Surround yourself with those family and friends that will help make you stronger.  Have your pity party days but do not let yourself dweal in them, pull yourself back up.  Praying for all. trish

Trish,

How are you doing now.

Clara

Kvdyson said:

Welcome, Loan

Hi Loan, so sorry to hear of your mom's diagnosis but glad to hear that she is doing well. I'm also being treated for uterine carcinosarcoma with the sandwich method. My chemo meds are different than the ones that she will be receiving but in general, I would recommend staying hydrated, eating lots of protein and keep moving. Walking helped me bounce back from both the surgery and the treatments. Miralax twice a day helped with the constipation.

I get a Neulasta shot after each round of chemo. That shot can cause bone pain since it helps your body build up white blood cells so I take a Claritin (yes, the allergy medicine - I don't know why it helps) during treatments. The first time I took the shot I had such intense pain in my jaw that I had to take some of the pain meds that were leftover from the surgery. It never got that bad again afterwards.

You didn't specify whether the radiation treatment will be external or internal? Mine was external. Taking probiotics helped keep the diarrhea associated with the treatment at bay. When it did kick-in a few times, Imodium AD was able to control it quickly.

It sounds like your mom has a great attitude already! Just remind her that beating this monster is a marathon and not a sprint. There will be good days and bad days but she can do this! We are all rooting for her!

Wishing you all strength and good health,
Kim

Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - June 2016
Radiation - external, 28 treatments, completed Mar 2016

 

How are you now? I had the same thing in the same year but my cancer came back in my lungs

clara

Ddkos said:

Uterine carcinosarcoma

i added a comment in August 3013, not quite five years after diagnosis (stage 3b) in October 2009 and didn't come back to the site again until now.   I am now almost seven years out of treatment.  My gyn oncologist released me from her care at the end of five years--March 2015.   Last year i asked my GP to run the CA-125 at my annual physical.   The count was at its lowest point.   I stated that I did not drastically change my diet in my original comment--and no, in response to a question asked,  I am not vegetarian!  My 32-year old niece, who is vegetarian, has stage 3 astrocytoma, and my brother, who was vegan has terminal stage four colon cancer.   Neither did I take massive new supplements.   I stayed positive, lived in my faith, and continued teaching my line dancing classes.   I try to eat a balanced diet but do not obsess over every bite.  No extremes!  I have some nerve damage in my feet from the chemo, but chemo itself was very easy for me.   The radiation caused some colon damage which still causes minor issues--have to know where bathrooms are--just in case who knows what may cause an issue.   Are these side effects I have difficulty living with?  No!   For anyone facing a new diagnosis--stay positive, don't stress over the statistics, and live each day to the fullest.   The person who seems the healthiest in a family can be the one gone first!   

How are you now?

jazzy1 said:

Welcome Oshbgosh

Know this cancer, MMMT is very, very aggressive.  Not sure exactly the year you were diagnosed as mentioned Sept 1013?  Do you mean 2012?  Did pathology find cancer any other places outside the uterus?

I was diagnosed 4 years ago as a stage 3c, cancer found in 1 pelvic lymph node.  What stage are you as I know it's grade 3?  Wish I was as trusting as you are, but can tell you I've been NED since completion of chemo and external pelvic radiation.  I do tons of research prior to start of treatments as a person who avoids any toxins and drugs in my body and thought I was a good eater and big exercise girl, but still saw a cancer diagnosis.  Found the only way was to get out as much of the cancer via my hysterectomy and hit the spots very hard with treatments where cancer was found.  Today I basically have overhauled my life style with natural type eating, exercise and  stress reducer techniques.  No guarantee this will work, but we all do the best we can...as this was my choice.

I can relate to keeping our immune systems strong and food is the easiest to start, but don't forgt the toxins around us -- BPA in plastics, homones in our animals we ingest such as in dairy, meat; then add on the pesticides in our vegetables and fruits.  As well we have toxins in our cosmetics, household cleaners and toiletrie product line.

Wishing you the best...

Jan

 

 

 

 

 

It’s 2020! Are you still surviving the uterine cancer? I’m so praying you are. I’m just starting this journey.

Willow oaks said:

Hello found you on an this old uterine cancer thread & Im hoping

It’s 2020! Are you still surviving the uterine cancer? I’m so praying you are. I’m just starting this journey.

I'm sorry to say that Jazzy1 passed away a few years ago. Her cancer recurred about 4 years after her initial treatment. But keep in mind that everyone's experience with cancer is unique to each individual and that you have a different form of uterine cancer than Jazzy and the others on this thread have/had.

Hi everyone, I came across this support group for women/relatives suffering from MMT/ carcinosarcom. I've read all of your touching stories, keep on fighting! My mother 52 was just diagnosed with a carcinosarcom, at first it was cancer of unknown primary and after multiple biopsies (negative for uterine and cervival) (no bleeding or spotting) they decided to treat it as an endometrial cancer. her case is a very strange one. She had a mass on her left back thigh for some time and her primary doctor brushed it off as a muscle spasm (she had 15 prior back surgeries for disc related issues) after 6 months of taking muscle relaxers she needed up in the emergency room with severe pelvic pain on the left side and after CT scan it revealed a 9 cm mass in left pelvis and 9 cm mass in left thigh. After multiple wrong diagnosis (unknown andocarcenoma, severe endometriosis) we finally found a doctor who classified it as carcinosarcoma.. he said in his 50 years he has never seen this cancer spread to the thigh or in this way. She is stage 4 high grade. It's abuting the left ovary and the iliac chain down to the back of the thigh. no major organs (thank god) have been affected. the oncologist recomended starting keytruda first and monitoring it along with chemo later on. Surgery is recommended once the tumor shrinks in size so that it can be safely removed without damaging healthy tissue. This week we start the immunotherapy.. prayers this works for her. This has rocked our world completely. It's so disheartening to read suck low survival rates for this cancer, but you guys gave me hope. Keep fighting! 

Raddd said:

Hi everyone, I came across

Hi everyone, I came across this support group for women/relatives suffering from MMT/ carcinosarcom. I've read all of your touching stories, keep on fighting! My mother 52 was just diagnosed with a carcinosarcom, at first it was cancer of unknown primary and after multiple biopsies (negative for uterine and cervival) (no bleeding or spotting) they decided to treat it as an endometrial cancer. her case is a very strange one. She had a mass on her left back thigh for some time and her primary doctor brushed it off as a muscle spasm (she had 15 prior back surgeries for disc related issues) after 6 months of taking muscle relaxers she needed up in the emergency room with severe pelvic pain on the left side and after CT scan it revealed a 9 cm mass in left pelvis and 9 cm mass in left thigh. After multiple wrong diagnosis (unknown andocarcenoma, severe endometriosis) we finally found a doctor who classified it as carcinosarcoma.. he said in his 50 years he has never seen this cancer spread to the thigh or in this way. She is stage 4 high grade. It's abuting the left ovary and the iliac chain down to the back of the thigh. no major organs (thank god) have been affected. the oncologist recomended starting keytruda first and monitoring it along with chemo later on. Surgery is recommended once the tumor shrinks in size so that it can be safely removed without damaging healthy tissue. This week we start the immunotherapy.. prayers this works for her. This has rocked our world completely. It's so disheartening to read suck low survival rates for this cancer, but you guys gave me hope. Keep fighting! 

What a story about your Mom.  I am so sorry she had this diagnosis, but we are all a statistic of one.  As her story proves.  I have never read of a tumor like that in the thigh either.   Prayers that it shrinks and the surgery can go ahead. 

Raddd said:

Thanks for the response

Thanks for the response ladies, really appreciate it. I'm new to this I'm not sure how a new thread would work, but I will keep posting here on how her treatment progresses. xoxo! 

Raddd,

I'm sorry to read about your mother's situation. It does seem unusual for this cancer to have spread to the thigh as it has done in her case, but as Forherself noted, we are all unique in our cancer experience.

Although carcinosarcoma is an aggressive type of uterine cancer, immunotherapy is a new tool that wasn't available a few years ago. I hope it brings her good results. Let us know how it goes.

To start your own thread that others may find more easily, go to the main page of this board (https://csn.cancer.org/forum/189) and see the item "Add new forum topic" right above the Topic list.  Selecting this option will open up a new topic thread.

If you are on Facebook, there is also a Facebook group for uterine carcinosarcoma at https://www.facebook.com/groups/carcinosarcoma/ that you may find helpful too.

@Cmb thanks for the help. @Loudy22... good luck with your mom! will definitely keep you posted and everyone else. when you ladies received your diagnosis was there any confusion on what kind of cancer it might be or did they know right away it was a carcinosarcoma? Because it took three different hospitals including (memorial Sloan Kettering in NYC) to misdiagnose her. It's very strange. 

I was Dx June 2018. With stage 4B Figo B. Endometrial cancer!  I had 6 chemos aug - nov 18.  Then a break,  hysterectomy laproscopic robotic,

the 3 chemos with carboplatin and avastin , I started with carbo taxol!   I had a clear petscan feb 2019 after hysterectomy,  then my local onc wouldnt tell me how many more chemos ! So after my last Chemo March 29, 2019( my 2nd opinion  ) I called cancer treatment center of American in Newnan Ga, my records were retrieved by CTCA. And April 15 2019 my husband and I went for my new patient orientation. They did their own ct scan exam and labs. My Ca 125 was normal. And my ct NED.   8 mths after treatment and syrgery I was in remission / NEd. And I still am as of April, 2021 2 years. NED. April 2019/ april 2021.  Sincerely. Yetti. I'm 59