Uterine Carcinosarcoma, any survivors out there?

cbotts
cbotts Member Posts: 6
edited October 2023 in Uterine/Endometrial Cancer #1
Hi everyone,
My mom was diagnosed with carcinosarcoma in Dec '08, she had a total hysterectomy and removal of pelvic lymph nodes (cancer was found there). Since then has done chemo and radiation, finishing in the summer of '09.
She's doing ok now, but I was just wondering if there was anyone out there with a similar experience (I actually just found out what her diagnosis was a few weeks ago and am seeing how rare it seems to be).
Any feed back would be much appreciated because I really don't want to continue looking up survival stats as they seem pretty dismal.
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Comments

  • cleo
    cleo Member Posts: 144
    #2
    Carcinosarcoma
    I was diagnosed in 2007, Stage 3/4 as it had spread into lymph glands and bladder. I did not look at any stats after the first check as they appeared to tell you all the doom and gloom and nil positives!! I had 6 weeks of radiotherapy.
    I am checked every three months, bloods etc, with a CT scan 6 monthly. To date there has been no change in the scans and I continue to be very well. I have slight lymphedema in my L leg due to the removal of lymph glands but that is easy to control and no hindrance.
    It took me a good six months to get all my energy back, I did a lot of afternoon dozing but was told that this would be the case.
    Pleased to hear that your mum is doing well and I am sure that will continue.
  • cbotts
    cbotts Member Posts: 6
    #3
    cleo said:

    Carcinosarcoma
    I was diagnosed in 2007, Stage 3/4 as it had spread into lymph glands and bladder. I did not look at any stats after the first check as they appeared to tell you all the doom and gloom and nil positives!! I had 6 weeks of radiotherapy.
    I am checked every three months, bloods etc, with a CT scan 6 monthly. To date there has been no change in the scans and I continue to be very well. I have slight lymphedema in my L leg due to the removal of lymph glands but that is easy to control and no hindrance.
    It took me a good six months to get all my energy back, I did a lot of afternoon dozing but was told that this would be the case.
    Pleased to hear that your mum is doing well and I am sure that will continue.

    Thank you very much for your
    Thank you very much for your quick response, its nice to know that there are other people going through similar experiences. I am glad to hear you are doing well, it gives me hope.
    Thank you.
  • cathyK
    cathyK Member Posts: 93
    #4
    any survivors out there
    hello
    I was diagnosed with stage 4b grade 3 endometrial cancer total historectomy in june, then in july got chemo, cisplatin andromisn and taxol given every 3 weeks, 2 days of chemo
    no radiation. ended chemo end of october, first 3 month exam is no cancer detected. I have spent a long time trying to find long term or even short term survivors with this stage of endometrial cancer and also have not found any , so guess I will try to be on here, saying Im still here , still around.
    how is your mum feeling now?
    cathy
  • cbotts
    cbotts Member Posts: 6
    #5
    cathyK said:

    any survivors out there
    hello
    I was diagnosed with stage 4b grade 3 endometrial cancer total historectomy in june, then in july got chemo, cisplatin andromisn and taxol given every 3 weeks, 2 days of chemo
    no radiation. ended chemo end of october, first 3 month exam is no cancer detected. I have spent a long time trying to find long term or even short term survivors with this stage of endometrial cancer and also have not found any , so guess I will try to be on here, saying Im still here , still around.
    how is your mum feeling now?
    cathy

    Hi Cathy,
    Thanks for getting
    Hi Cathy,
    Thanks for getting back to me. I hope you are doing well.
    So for mom is ok, last CT was clear, she has a follow up on in the next few weeks and she seems to be doing well. How are things on your end?
  • Countrygirl3
    Countrygirl3 Member Posts: 7
    #6
    cathyK said:

    any survivors out there
    hello
    I was diagnosed with stage 4b grade 3 endometrial cancer total historectomy in june, then in july got chemo, cisplatin andromisn and taxol given every 3 weeks, 2 days of chemo
    no radiation. ended chemo end of october, first 3 month exam is no cancer detected. I have spent a long time trying to find long term or even short term survivors with this stage of endometrial cancer and also have not found any , so guess I will try to be on here, saying Im still here , still around.
    how is your mum feeling now?
    cathy

    Howdy
    I was slammed with stage 3 endometrial carconosarcoma Hysterectomy in May, it came back in Sept, so I had 2 rounds of radiation and start chemo Monday every 3 weeks for 6 treatments. I'm determined to fight this evil beast, no matter what.
    Take care
  • kkstef
    kkstef Member Posts: 688 Member
    #7
    Countrygirl3 said:

    Howdy
    I was slammed with stage 3 endometrial carconosarcoma Hysterectomy in May, it came back in Sept, so I had 2 rounds of radiation and start chemo Monday every 3 weeks for 6 treatments. I'm determined to fight this evil beast, no matter what.
    Take care

    Another warrior!
    Hi Countrygirl....so sorry that to hear about your recurrence, but you will find much support and on this board. What type of chemo will you have? We are all here supporting you and ready to answer any questions that you have.

    With your positive attitude, I am convinced that you will win this battle. Carry on!!

    Karen
  • Countrygirl3
    Countrygirl3 Member Posts: 7
    #8
    kkstef said:

    Another warrior!
    Hi Countrygirl....so sorry that to hear about your recurrence, but you will find much support and on this board. What type of chemo will you have? We are all here supporting you and ready to answer any questions that you have.

    With your positive attitude, I am convinced that you will win this battle. Carry on!!

    Karen

    Thanks for your support
    Guess I'm kinda anxious to just get my first week started, so I will sort of know what I'm dealing with, hoping I don't get sick. Some days I'm a brave rebel and other's I feel like a scardee cat. It sure is good to know you're all out there. I think the chemo is the same as what Cathy had.
  • Judi1213
    Judi1213 Member Posts: 5
    #9
    Uterine Carcinosarcoma October 2010
    Hi,
    I had a complete hysterectomy in mid-October 2010. I am on my third chemo treatment with 3 more to go; I will begin radiation 5 days a week (weekends off) for 5 to 6 weeks after that.
    I feel good. I'm handling chemo pretty well not too many side effects. How is your mother doing now? It is very difficult to research this rare uterine cancer and would love to stay in touch.

    Thank You,
    Judi
    (Ohio)
  • kansasgal
    kansasgal Member Posts: 122 Member
    #10
    Judi1213 said:

    Uterine Carcinosarcoma October 2010
    Hi,
    I had a complete hysterectomy in mid-October 2010. I am on my third chemo treatment with 3 more to go; I will begin radiation 5 days a week (weekends off) for 5 to 6 weeks after that.
    I feel good. I'm handling chemo pretty well not too many side effects. How is your mother doing now? It is very difficult to research this rare uterine cancer and would love to stay in touch.

    Thank You,
    Judi
    (Ohio)

    Uterine Carcinosarcoma - MMMT
    Not to take anything away from this ACS discussion group, but there is also a discussion group on yahoo dealing with uterine carcinosarcoma, formerly referred to as MMMT. I am posting the web address for it. Note that it ends with uterinemmmt - all one word followed by a slash. http://groups.yahoo.com/group/uterinemmmt/

    You will need to become a yahoo member by following the prompts.

    You might also post a new topic on our site listing both Uterine Carcinosarcoma and MMMT in your topic. That might bring more attention from other uterine cancer group members with a similar diagnosis to yours since your type of cancer has multiple names.

    Sending you a big hug.
    Sally
  • Lione
    Lione Member Posts: 2
    #11
    Judi1213 said:

    Uterine Carcinosarcoma October 2010
    Hi,
    I had a complete hysterectomy in mid-October 2010. I am on my third chemo treatment with 3 more to go; I will begin radiation 5 days a week (weekends off) for 5 to 6 weeks after that.
    I feel good. I'm handling chemo pretty well not too many side effects. How is your mother doing now? It is very difficult to research this rare uterine cancer and would love to stay in touch.

    Thank You,
    Judi
    (Ohio)

    Uterine Carcinosarcoma
    Hi Judi,

    My 67 year old sister has the same cancer and was given a complete histerectomy in mid-August of 2010. She took six rounds of chemo and was finished in December of 2010. Her cat scan in January showed all the cancer was gone and only microscopic scar tissue was seen. We were thrilled to hear this news, however low and behold in mid February her stomach began swelling and they had to drain two liters of fluid from her body. She is now taking a chemo pill every day for a month and is not doing very well. It makes her extremely fatigued and she has had to have blood transfusions and also developed blood clots in her lungs and neck. They had her on blood thinners and she is doing better with the clots but is still so weak she can hardly walk to the bathroom. How are you doing now and are your symptoms similar? The doctor says no to radiation treatments, but I noticed others on this chat have had radiation so I was wondering if anyone has had good results with it. Thanks and you are in my thoughts and prayers. Lione
  • ediegram
    ediegram Member Posts: 27
    #12
    Clearcell Carcinoma?
    Hello,
    My Mom was diagnosed with Type II uterine cancer - clear cell carcinoma with serous cells. I think we are talking about the same type of cancer. My mom was staged at 1B and had a full hysterectomy and lymph nodes removed. Thank God her pathology reports came back negative. Because the cancer had gone through the uterine lining, she is doing chemo treatments. She is suppose to have 6 - once week every three weeks. She has 2 down and 4 to go. This 2nd one has taken it's toll on her. She has to have a blood transfusion today. :( I know she will beat this though!!!

    XOXO
    Edie
  • ClareD
    ClareD Member Posts: 1
    #13
    Same Position
    Hi

    I have just left a consultantion with my mum in the UK. She has had surgery to remove the tumour but it has been staged at Grade III Uterine Carcinosarcoma.

    we are all a little shocked to hear it was this much more aggressive rarer tumour instead of Endometrical Carcinoma. Any advice offered is appreciated. Cbotts how is your mum doing?
  • Lione
    Lione Member Posts: 2
    #14
    ediegram said:

    Clearcell Carcinoma?
    Hello,
    My Mom was diagnosed with Type II uterine cancer - clear cell carcinoma with serous cells. I think we are talking about the same type of cancer. My mom was staged at 1B and had a full hysterectomy and lymph nodes removed. Thank God her pathology reports came back negative. Because the cancer had gone through the uterine lining, she is doing chemo treatments. She is suppose to have 6 - once week every three weeks. She has 2 down and 4 to go. This 2nd one has taken it's toll on her. She has to have a blood transfusion today. :( I know she will beat this though!!!

    XOXO
    Edie

    Uterine Carcinosarcoma
    Hi, thanks for writing, my sister's cancer is Uterine Carcinosarcoma. I believe it was stage III. She had no symptoms until one day she passed a clot of blood and within two weeks she was diagnosed and two weeks later had a complete hysterectomy as well as numerous tumors removed from her stomach and colin. This cancer spread like wildfire! She is currently on a chemo pill that they give lung cancer patients (because it is very agressive) and we will not know the results for a few weeks. I know every situation is different and I hope and pray your mom will get through this. Thanks and keep us informed.

    Lione
  • Vbudafly8j7
    Vbudafly8j7 Member Posts: 2
    #15
    kansasgal said:

    Uterine Carcinosarcoma - MMMT
    Not to take anything away from this ACS discussion group, but there is also a discussion group on yahoo dealing with uterine carcinosarcoma, formerly referred to as MMMT. I am posting the web address for it. Note that it ends with uterinemmmt - all one word followed by a slash. http://groups.yahoo.com/group/uterinemmmt/

    You will need to become a yahoo member by following the prompts.

    You might also post a new topic on our site listing both Uterine Carcinosarcoma and MMMT in your topic. That might bring more attention from other uterine cancer group members with a similar diagnosis to yours since your type of cancer has multiple names.

    Sending you a big hug.
    Sally

    MMMT
    Hello,
    My mother 49 yrs old was just diagnosed with MMMT. They did not change or say it is formally known as anything. They keep saying Mixed Mullerian..and on Thursday she just had a hysterectomy. I am pretty scared through this whole thing, because they said Stage 3. I tried signing up for the yahoo chat but it didn't work for me;( My mom lives in Arkansas and my brothers and I live here in Vegas. She is very against radiation and chemo..so I don't know what to say or do, because I don't know anything about this. Thanks
  • RoseyR
    RoseyR Member Posts: 471 Member
    #16
    ClareD said:

    Same Position
    Hi

    I have just left a consultantion with my mum in the UK. She has had surgery to remove the tumour but it has been staged at Grade III Uterine Carcinosarcoma.

    we are all a little shocked to hear it was this much more aggressive rarer tumour instead of Endometrical Carcinoma. Any advice offered is appreciated. Cbotts how is your mum doing?

    Sorry to Hear

    Clare,

    If your mother is being treated with taxol and carboplatin, you might scroll through any of my comments (all by Rosey R, made between November, 2011 and now) about supplements that might help to prevent PN (peripheral neuropathy) and other side effects of this chemo regimen.

    Let us know what treatment has been prescribed for her.

    Wish I had all my comments in one place but am pretty tired right now and have to sign off after hours on the computer. I also just made some comments about what I ATE while on chemo; it's the first new topic on the discussion board. Also commented on how to make turmeric and curcumin (which your mom should take!) more effective.

    May have more time to write more later.

    Best,
    Rosey R
  • oshbgosh
    oshbgosh Member Posts: 2
    #17
    I am a Carcinosarcoma surviver with out Chemo so far !!

    I am 54 years old, and I was diagnosed with Carcinosarcoma (Uterine cancer in) Sept of 1013. Had a complete hysterectomy October 3 2013.

    I was told I had a very aggressive cancer and was to start Chemo and Radiation. I did a lot of reading and went to my chemo class and decided it made no sense to me to knock the Immune system down, the very thing we need to heal our body’s, so I chose not to do it. My doctor was not pleased with my decision. I then started to change things in my life. The main thing was getting my body’s Ph. correct and to do so I needed to detox my body and treat my body with the right foods and supplements. I used my food and drinks as my medicine. I just had my first CT scan and blood work since surgery and I am stable so far. This is the way I chose and I am not telling you not to do chemo but you should be doing this to help you get through chemo stronger. Chemo drugs are poison is going into the body, help your body recover with the right foods.

    If you are interested look up, (Acidosis) this is about your body’s ph. and how simple it is to check, and how to correct it.

    Wheatgrass juice, Kangen water, and organic everything you eat!!! As you read these sights you will learn more things you can take. Use your food as your medicine to give the body what it needs to fight; the body can do it with a little help from you.

  • jazzy1
    jazzy1 Member Posts: 1,379
    #18
    oshbgosh said:

    I am a Carcinosarcoma surviver with out Chemo so far !!

    I am 54 years old, and I was diagnosed with Carcinosarcoma (Uterine cancer in) Sept of 1013. Had a complete hysterectomy October 3 2013.

    I was told I had a very aggressive cancer and was to start Chemo and Radiation. I did a lot of reading and went to my chemo class and decided it made no sense to me to knock the Immune system down, the very thing we need to heal our body’s, so I chose not to do it. My doctor was not pleased with my decision. I then started to change things in my life. The main thing was getting my body’s Ph. correct and to do so I needed to detox my body and treat my body with the right foods and supplements. I used my food and drinks as my medicine. I just had my first CT scan and blood work since surgery and I am stable so far. This is the way I chose and I am not telling you not to do chemo but you should be doing this to help you get through chemo stronger. Chemo drugs are poison is going into the body, help your body recover with the right foods.

    If you are interested look up, (Acidosis) this is about your body’s ph. and how simple it is to check, and how to correct it.

    Wheatgrass juice, Kangen water, and organic everything you eat!!! As you read these sights you will learn more things you can take. Use your food as your medicine to give the body what it needs to fight; the body can do it with a little help from you.

    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

     

     

     

     

     

  • Susanna23
    Susanna23 Member Posts: 66 Member
    #19
    MMMT comment

    I just wanted to add to Jan's comment about MMMT and treatment. I was offered a choice of just follow up (no further treatment) or chemo in December 2010 after surgery for Stage 1a MMMT. I chose to do six cycles of carbo/taxol, with the usual reservations of toxicity/effects on the immune system but also did various other things such as vitamin D, reiki, diet, exercise and I have an integrative medicine doctor I still see who prescribes mistletoe therapy to prevent recurrence. So far, so good - last checkup two weeks ago, all was well. I have no idea whether chemo contributed to my survival so far but felt like the right choice for me (and also had few side effects)

    Take care and let us know how you get on

    Susan (london) x 

  • cookie24
    cookie24 Member Posts: 6
    #20
    oshbgosh said:

    I am a Carcinosarcoma surviver with out Chemo so far !!

    I am 54 years old, and I was diagnosed with Carcinosarcoma (Uterine cancer in) Sept of 1013. Had a complete hysterectomy October 3 2013.

    I was told I had a very aggressive cancer and was to start Chemo and Radiation. I did a lot of reading and went to my chemo class and decided it made no sense to me to knock the Immune system down, the very thing we need to heal our body’s, so I chose not to do it. My doctor was not pleased with my decision. I then started to change things in my life. The main thing was getting my body’s Ph. correct and to do so I needed to detox my body and treat my body with the right foods and supplements. I used my food and drinks as my medicine. I just had my first CT scan and blood work since surgery and I am stable so far. This is the way I chose and I am not telling you not to do chemo but you should be doing this to help you get through chemo stronger. Chemo drugs are poison is going into the body, help your body recover with the right foods.

    If you are interested look up, (Acidosis) this is about your body’s ph. and how simple it is to check, and how to correct it.

    Wheatgrass juice, Kangen water, and organic everything you eat!!! As you read these sights you will learn more things you can take. Use your food as your medicine to give the body what it needs to fight; the body can do it with a little help from you.

    I was diagnosed with the same

    I was diagnosed with the same thing last January (2012). I also went with the Chemo like the other person that replied to you. My 2 doctors said that this type of cancer is very aggressive which is usually found in the ovaries not the uterus. Had a total hysterectomy in February of 2012 and started my chemo in March and ended in June. Then during all this I found out that I had lung cancer and had my lower right lube remove in July. As of today I'm clean. I started going to the gym in December but having a little hard time with it because of my breathing,I lost 15% of my capacity breathing but I'm trying. I do agree with you that the Chemo is posion I feel that my body will not be the same but this was my choice and I'm okay with it.Good luck with your detox.

  • oshbgosh
    oshbgosh Member Posts: 2
    #21
    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

     

     

     

     

     

    I stay away from dairy now

    I stay away from dairy now for the most part if I do have any it is organic same with my meat or anything I eat. I make my own soaps and lotions from organic products. My Kangan water machine has a setting for a low ph for cleaning and a high ph for drinking. Organic foods have no chemicales or pestacides, taste so much better but are much more spendy. I will be putting in my own organic garden this year. It is now away of life for me. No microwave, no plastic. I do take vitamine B17, I know is not sold in the U.S. but  here in Alaska we have a little law that alows for the sale of B17 so I can buy it from the health food store. I think the fresh weatgrass juice and the water are the two most important things I take, I also eat alot of live foods. Just kind of have to go backwards like thing use to be years ago befor all this crap has been done to our food. By eating organic you do not get the hormones and crap injected into the animals to make them GROW FAST. Same with fruits and vegetables organic has not been modified. When fruits and vegetables have been geniticly modified they lost some very important things that our bodys need.

    Yes I did meen 2012. And no cancer was found any place else.

    Everyone has cancer in there body but only some of us have it go haywire and I do beleive it happens when our body ph is to low. Just pee on a ph strip and you will know what your ph is.

    I do it almost everytime so I can keep it in check. The first one in the morning is the most important one and the hardest one to get corected.

    I just herd from DR. Oz show that a low dose asprin a day helps keep cancer away so I have added that to my daily routine good for the heart also.

     

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