Uterine Carcinosarcoma, any survivors out there?

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  • Countrygirl64
    Countrygirl64 Member Posts: 6
    edited January 2020 #142
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    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,

    Trish,

    How are you doing now.

     

    Clara

  • Countrygirl64
    Countrygirl64 Member Posts: 6
    edited January 2020 #143
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    Here!

    I had stage IV uterine carcinosarcoma and did hysterectomy and chemo, been cancer free since June 2011! My best to your mom.

    How are you now?
    Clara

    How are you now?

    Clara

  • Countrygirl64
    Countrygirl64 Member Posts: 6
    edited January 2020 #144
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    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

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

     

    clara

  • Countrygirl64
    Countrygirl64 Member Posts: 6
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    I need help

    Hello everyone,

    I've been reading this discussion board almost religiously. I just need more answers than what I'm reading online. I know carcinosarcomas are a scary thing. My mother was recently diagnosed through a biopsy. It all started out as her bleeding a lot down there and then hearing something about an enlarged uterus and as I've read these are usually symptoms from uterine cancer. She's been feeling this way since June of this year. I'm just really scared you know? Not cancer again, this hasn't been the easiest year as I just lost my brother to short battle with lymphoma last month. I just feel like it's not being taken as serious when this is a malignant tumor. Her surgery isn't scheduled till December 2nd and I keep on thinking to myself if this is a malignant one shouldn't it be considered an emergency or something? 

    I need help on what I should do. I pay attention to my mother looking for any symptoms of this possibly spreading as I've seen with my brother and so far very little pain here and there. I know I'm beginning to bother her and even scare her sometimes but I'm just really scared myself. I don't know how you women do it, but I send my love and many hugs to each and every single one of you who is going through such a terrible thing. It's bad enough that we all go through so many bad things in our lives and then illnesses to top that off? Your responses are greatly appreciated and I wish you all a good day. 

     

    Ashleig

    How is your mom now?
    clara

    How is your mom now?

    clara

  • Countrygirl64
    Countrygirl64 Member Posts: 6
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    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?

    How are you now?

  • cmb
    cmb Member Posts: 1,001 Member
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    Trish,

    Trish,

    How are you doing now.

     

    Clara

    Last online date

    Clara,

    txtrisha55 does check in periodically, but sometimes it's hard to find new posts in an old thread like this. According to her last update on her profile (click on the user name under her picture), she was still NED as of August, 2019.

    When you read a member's profile, you can also see the date they joined and when they were last online. Some members, like txtrisha55, have also entered information about their diagnosis, treatment and status.

    We'd like to hear more about how you are doing, but I suggest that you start a new topic so that more people and can it and respond.

  • Willow oaks
    Willow oaks Member Posts: 39 Member
    edited January 2020 #148
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    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

     

     

     

     

     

    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.

  • Willow oaks
    Willow oaks Member Posts: 39 Member
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    giggs100 said:

    uterine carcinosarcoma

    10-9-15 I am also new.   I just want to thank each and everyone of you who have posted here.   I was just diagnosed with this as of last week Wednesday.   I am schudeled for my CT scan this coming Thursday to find out what stage I am in.  Plan 1 right now is my surgery at this time has been scheduled for Nov. 2nd for a complete hysterectomy (and depending what the CT scan shows possibly more).   I have been positive about the outcome but yet I am very frightened.  I just thank you all for your comments.  They have been very beneficial for me.

     

    Uterine cancer

    How did things work out? I’m just starting this now? Praying you are still there. 

  • cmb
    cmb Member Posts: 1,001 Member
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    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.

    Willow oaks

    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.

  • Willow oaks
    Willow oaks Member Posts: 39 Member
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    cmb said:

    Willow oaks

    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.

    Thanks for updating about

    Thanks for updating about Jazzy, I’m sorry to hear she passe. 

  • Raddd
    Raddd Member Posts: 4
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    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! 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited July 2021 #153
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    Hey Raddd - just wanted to

    Hey Raddd - just wanted to say welcome to our board. You have come to a great place to provide support and answers when we can. Your Mom is very lucky to have you.

    I don't have any experience with immunotherapy but several of our members are currently going through treatment that may be able to help you with questions.  This is a very old thread so you may want to start a new subject where your post will be seen by everyone.

    Please let us know how your Mom is doing. 

    Love and Hugs

    Cindi

     

  • Forherself
    Forherself Member Posts: 999 Member
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    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! 

    Another welcome,

    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
    Raddd Member Posts: 4
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    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! 

  • cmb
    cmb Member Posts: 1,001 Member
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    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! 

    Welcome

    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.

  • LouDy22
    LouDy22 Member Posts: 25 Member
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    Radd

    mom Has stage 4b Carcinosarcoma as well and will be beginning Keytruda/lenvima next week , please please keep me updated on your moms progress

  • Raddd
    Raddd Member Posts: 4
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    @Cmb thanks for the help.

    @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. 

  • MAbound
    MAbound Member Posts: 1,168 Member
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    Raddd said:

    @Cmb thanks for the help.

    @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. 

    Biopsy vs D&C

    I think your story is just another example why we tend to recommend people have a D&C rather than a biopsy to diagnose uterine cancer. Biopsies are hit or miss for finding cancer. They really only find it as long as the doctor hits the exact right spot which is a matter of luck if they can't see the lesion. It's really upsetting that doctors still insist on this procedure in the beginning because it can be very painful for some to be put  through it only to have it miss a cancer when it's there. Just go right to the D&C for symptoms already!! 

  • yetti
    yetti Member Posts: 82 Member
    edited July 2021 #160
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    Survivor of Stage IV B Figo 2. Endometrial endo carcinoma

    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

  • cmb
    cmb Member Posts: 1,001 Member
    edited July 2021 #161
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    yetti said:

    Survivor of Stage IV B Figo 2. Endometrial endo carcinoma

    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

    Good news

    Yetti,

    Thanks so much for this update. It's great to hear that you're NED three years after diagnosis. It's interesting that you received Avastin as part of your treatment. Several years ago there was another woman here who was diagnosed with Stage IV carcinosarcoma just before turning 31. See her profile of apoohneicie at https://csn.cancer.org/user/232818

    She persevered with the treatments her doctors prescribed. And while she doesn't post to this site any longer, she is still alive at 45 and doing well. You can see her earlier posts on Twitter at https://twitter.com/apoohneicie and her later posts at https://twitter.com/morphisa.

    She proves that some people do exceed expectations, even for rare and aggressive, late stage cancers. Perhaps in the future doctors will learn why certain individuals beat the odds as it may be tied to genetics or particular sensitivity to certain treatments. In April's case, it looks like Avastin may have been particularly well suited for her. In the meantime, her long remission helps the rest of us remain hopeful in our cases.