Uterine Carcinosarcoma, any survivors out there?

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  • giggs100
    giggs100 Member Posts: 91 Member
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    I am positive

    Trish thank you for your story.  I have a niece that is a breast cancer survivor and she is keeping me positive in my thoughts.   I have good days and bad moments with thoughts but at this point in time my health has been good and that leads to positive thoughts.  I think it is the shock of hearing you have an aggressive cancer when you don't feel sickly.  For me the whole story started Sept.9th with bleeding.  I got in to see my regular doctor that day and he sent me off to see a gyn. doctor appt was for the following week.  Exam with gyn and test samples taken of the uterus and a polp removed.  Both came back OK.   No cancer.  Continued to bleed and the got really bad cramps the following week and past a fibrous tumor. Which I went to gyn office and had it removed the next day and she had it tested and it came back sarcoma and off to the gyn/onc office I went the next week and was told my cancer is uterine carcinosarcoma.  Like I said above and I am now waiting to have the CT scan done to find out how advanced it is.  And YES I am staying positive !!!! 

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    giggs100 said:

    I am positive

    Trish thank you for your story.  I have a niece that is a breast cancer survivor and she is keeping me positive in my thoughts.   I have good days and bad moments with thoughts but at this point in time my health has been good and that leads to positive thoughts.  I think it is the shock of hearing you have an aggressive cancer when you don't feel sickly.  For me the whole story started Sept.9th with bleeding.  I got in to see my regular doctor that day and he sent me off to see a gyn. doctor appt was for the following week.  Exam with gyn and test samples taken of the uterus and a polp removed.  Both came back OK.   No cancer.  Continued to bleed and the got really bad cramps the following week and past a fibrous tumor. Which I went to gyn office and had it removed the next day and she had it tested and it came back sarcoma and off to the gyn/onc office I went the next week and was told my cancer is uterine carcinosarcoma.  Like I said above and I am now waiting to have the CT scan done to find out how advanced it is.  And YES I am staying positive !!!! 

    Do not let any dr use a tool

    Do not let any dr use a tool or procedure called  a morcerator (sp?) To remove any other fibroid tumors, if the ct scan show more. Demand either the robotic or a full abdominal surgery. The morcerator is like a mini blender with blades that cuts up the tumor while throwing cells all through out the pelvic area. If there are cancer cells it throws those too.  Talk to the gyn onc dr before they do surgery and ask what kind they will do. My dr did the full abdominal so she could look at all the organs for signs of cancer any where else out side the uterus.  Thank God there was not any that she saw.  Two microscopic cells were found in 1 lymph node in the pelvic area but no further nor through the uterine wall.  I too have carcinoma sarcoma uterine cancer or what they use to call MMMT which is a grade 3 cancer. I was stage 3c1because of that lymph node per the pathology report the tumor in the uterus was stage 1a. Make sure you get copies of all path reports from all the surgeries and the report from your ct scan. You could even get a copy of tbe scan on a cd if you ask, especially if you think you will ask for a second opinion. Best wishes. Trish

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    carcinosarcoma

    2014-07-23 I am new. Did not see how to start a post?. I found in April of 2014 I had carcinosarcoma. I had the total abdominal hysterectomy. Was bleeding 6 weeks before surgery. Was told no nodes involved and invasion of myometrium of 0.1%. Told stage 1a. Told with 4 rounds of taxol and 4 isofosamide each round being 3 days in a row , one day taxol and isofosamide and the next 2just isofosamide and 4 - 15 minutes of vaginal brachytherapy I'd have an 80% survival. I got all the isofosamide and got through 2 rounds of taxol at a very high dose on both. The taxol caused an emergency for me but I did get 2 out of 4 in me and had to stop that one. I get the radiation in August. I am scared as I have stayed on the net to read through a lot of combined doctor studies. All keep saying even in stage 1 it is back in the lungs etc in 1or2 years. It has helped to see you people are alive last  that for me. I won't know what the last consult is rate will be told me after radiation so will be waiting to hear. The studies named off about every combined chemo and radiation still saying very poor and a lot dead? I did read in one of those isofosamide was considered best with a choice of two or three mixed in. Seems scary and scattered so I am glad to find this site. Please email me etc at atarten@hotmail.com. thanks.

    I had the option to go into a

    I had the option to go into a trial with either tbe isfosomide taxol or carbo taxol for my treatment but when I took the paperwork and read it to choose it did scare me and my family as one of the side effects of the isfosimide was death.  Why would I put a drug into my body that might kill me while trying to heal me.  I talked to my gyn onc dr and asked her opinion she said just go with the carbo taxol and do not do the clinical trail because there was no guarantee that  at I would get that treatment. So I had six carbo taxol treatments each 1 day but every 21 days and no radiation.  4 years later I am still here with no recurance. Best wishes trish

  • giggs100
    giggs100 Member Posts: 91 Member
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    Too late on what tool used.

    The procedure has already been done.  As of right now I don't know what tool was used but will call the gyn dr that did it and ask what was used.  They did an ultra sound and found out i have a 1 centimeter tumor but it is there yet and when they take uterus out it will be gone at that time.  As of right now only procedure to be done is total hysterectomy on Nov. 2nd and ct scan..  As far as I know as of now the surgery will be done through the scope system. 4 or 5 cuts.  But thank you for telling me about asking for all reports and when chemo is suggested to ask for names of drugs to be used. Never thought to ask for those. What you have told me here is so beneficial. Some one else has told me not to go into any medical trials procedures or with drugs. Did you have any lymph nodes removed? 

  • giggs100
    giggs100 Member Posts: 91 Member
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    Do not let any dr use a tool

    Do not let any dr use a tool or procedure called  a morcerator (sp?) To remove any other fibroid tumors, if the ct scan show more. Demand either the robotic or a full abdominal surgery. The morcerator is like a mini blender with blades that cuts up the tumor while throwing cells all through out the pelvic area. If there are cancer cells it throws those too.  Talk to the gyn onc dr before they do surgery and ask what kind they will do. My dr did the full abdominal so she could look at all the organs for signs of cancer any where else out side the uterus.  Thank God there was not any that she saw.  Two microscopic cells were found in 1 lymph node in the pelvic area but no further nor through the uterine wall.  I too have carcinoma sarcoma uterine cancer or what they use to call MMMT which is a grade 3 cancer. I was stage 3c1because of that lymph node per the pathology report the tumor in the uterus was stage 1a. Make sure you get copies of all path reports from all the surgeries and the report from your ct scan. You could even get a copy of tbe scan on a cd if you ask, especially if you think you will ask for a second opinion. Best wishes. Trish

    Hmmmmmmm why is my comment appearing 3 times

    Can't figure out my comment is appearing 3 times.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,447 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.

     

    giggs100, it is ok to be

    giggs100, it is ok to be frightened!!!  Quite a few of us have finished the surgery and treatment, so the unknown is frightening but believe us - you can do this. 

    Do you have anyone who can go with you to dr appointments to sit and take notes?  It is a second set of ears to hear what is being said as well, there is a lot coming at you and hard to remember everything being said.  If there is someone who can sit and take notes so you can focus your full attention on the doctor it may help.  I was very fortunate to have that and we would recall what we heard later.  To this day I will read the notes she wrote during those dr visits and the notes we took during chemo.  For example, we knew that when they were clearing my chemo line with saline we knew to ask to push it slowly.  I also noted all my chemo nurses names so I could do something special for them when I was done.

      

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    giggs100 said:

    Hmmmmmmm why is my comment appearing 3 times

    Can't figure out my comment is appearing 3 times.

     

    If you bit submit more than

    If you bit submit more than one time it will post more than one time.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    giggs100, it is ok to be

    giggs100, it is ok to be frightened!!!  Quite a few of us have finished the surgery and treatment, so the unknown is frightening but believe us - you can do this. 

    Do you have anyone who can go with you to dr appointments to sit and take notes?  It is a second set of ears to hear what is being said as well, there is a lot coming at you and hard to remember everything being said.  If there is someone who can sit and take notes so you can focus your full attention on the doctor it may help.  I was very fortunate to have that and we would recall what we heard later.  To this day I will read the notes she wrote during those dr visits and the notes we took during chemo.  For example, we knew that when they were clearing my chemo line with saline we knew to ask to push it slowly.  I also noted all my chemo nurses names so I could do something special for them when I was done.

      

    Yes! My sister and daughter go to each appointment

    My family consist of my sister and daughter.  My best friend was there before and after surgery. My daughter stayed at the hospital 24/7 while I was there except my best friend came and stayed one night with me. My daughter  went to every chemo treatment and by best friend came to two of them. The first chemo treatment, the nurse put the benadryl shot in at the low point of the drip, it hit my system like a knock out punch that stated at my feet and rushed up to my head. I was out almost the whole day.  The next time I told a different nurse not to give it so low, she said they are not supposed to do that.  Lesson learned.  Where I went each person has a private chemo room. Tv, they have snacks you can get, you can bring your own, we took games and dvd's to watch and food and drinks.   Best advice is to take a friend or family member to all dr appointments and do take someone to the first chemo because you do not know how you will react to the drugs. I forgot about that because there was no way my family was not going. They could not go to my Sep one I felt like such grown up going by myself. Trish

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    giggs100 said:

    Too late on what tool used.

    The procedure has already been done.  As of right now I don't know what tool was used but will call the gyn dr that did it and ask what was used.  They did an ultra sound and found out i have a 1 centimeter tumor but it is there yet and when they take uterus out it will be gone at that time.  As of right now only procedure to be done is total hysterectomy on Nov. 2nd and ct scan..  As far as I know as of now the surgery will be done through the scope system. 4 or 5 cuts.  But thank you for telling me about asking for all reports and when chemo is suggested to ask for names of drugs to be used. Never thought to ask for those. What you have told me here is so beneficial. Some one else has told me not to go into any medical trials procedures or with drugs. Did you have any lymph nodes removed? 

    Yes I had 10 nodes removed at

    Yes I had 10 nodes removed at the time of surgery. Also removed was  the cervix, the tubes, the ovaries, the uterus and they removed the omentium (the layer of fat that covers the organs in the abdominal area) she said cancer cells like to go there if it has spread.  Actually she said that mmmt cancer likes to hide in fat cells, I told her oh sbit then I am in triuble because I am full of fat cells. That kind of shocked her but made the tension in the room lighten up a lot and set the tone for the rest of our appointments. Just take it one day at a time. Trish

  • DrienneB
    DrienneB Member Posts: 182
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    giggs100 said:

    Too late on what tool used.

    The procedure has already been done.  As of right now I don't know what tool was used but will call the gyn dr that did it and ask what was used.  They did an ultra sound and found out i have a 1 centimeter tumor but it is there yet and when they take uterus out it will be gone at that time.  As of right now only procedure to be done is total hysterectomy on Nov. 2nd and ct scan..  As far as I know as of now the surgery will be done through the scope system. 4 or 5 cuts.  But thank you for telling me about asking for all reports and when chemo is suggested to ask for names of drugs to be used. Never thought to ask for those. What you have told me here is so beneficial. Some one else has told me not to go into any medical trials procedures or with drugs. Did you have any lymph nodes removed? 

    lymph node dissections

    I also have carcinosarcoma, stage IIIB, grade 3. My surgeon took out 84 lymph nodes, and I wish she had not taken so many. It doesn't hurt to ask your doctor how he/she plans to address that issue.

    -j

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,447 Member
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    DrienneB said:

    lymph node dissections

    I also have carcinosarcoma, stage IIIB, grade 3. My surgeon took out 84 lymph nodes, and I wish she had not taken so many. It doesn't hurt to ask your doctor how he/she plans to address that issue.

    -j

    Excellent point!  I didn't

    Excellent point!  I didn't know to ask this but 84 is a LOT!

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Excellent point!  I didn't

    Excellent point!  I didn't know to ask this but 84 is a LOT!

    I actually did

    think to ask, just before surgery, but my surgeon said that he did not know how many he would remove because everyone was different, and he wouldn't have an idea until he got in there.  He ended up taking 22.  

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    Editgrl said:

    I actually did

    think to ask, just before surgery, but my surgeon said that he did not know how many he would remove because everyone was different, and he wouldn't have an idea until he got in there.  He ended up taking 22.  

    Did you also know that during

    Did you also know that during chemo and if your hair does fall out, the dr can provide you with forms to fill out so that if you want help in getting a wig that your insurance will help pay for it?  It is like them providing a prostatic for your body.  Just like if you have a mastectomy they will give a woman a padded bra to wear until she gets reconstructive surgery.  They offered it to me and I turned them down and chose to go bald.  But it is an option. trish

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,447 Member
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    Did you also know that during

    Did you also know that during chemo and if your hair does fall out, the dr can provide you with forms to fill out so that if you want help in getting a wig that your insurance will help pay for it?  It is like them providing a prostatic for your body.  Just like if you have a mastectomy they will give a woman a padded bra to wear until she gets reconstructive surgery.  They offered it to me and I turned them down and chose to go bald.  But it is an option. trish

    Trish, I think it still

    Trish, I think it still depends on your insurance company.  My company did allow for an allowance and was given an RX for a wig :)  It is also when I knew I could "let go" I gave them to the American Cancer Society so other women, who didn't have insurance like me, could have something.

    I was comfortable being bald with my friends and family, but work??  I couldn't do it.  I did wear hats, scarves, and a really neat t-shirt wrap on Fridays.  I have a lot of mixed feelings on being bald still.  I think losing my eyelashes was the worst though. 

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    Trish, I think it still

    Trish, I think it still depends on your insurance company.  My company did allow for an allowance and was given an RX for a wig :)  It is also when I knew I could "let go" I gave them to the American Cancer Society so other women, who didn't have insurance like me, could have something.

    I was comfortable being bald with my friends and family, but work??  I couldn't do it.  I did wear hats, scarves, and a really neat t-shirt wrap on Fridays.  I have a lot of mixed feelings on being bald still.  I think losing my eyelashes was the worst though. 

    I got real good at shaving my

    I got real good at shaving my head and went bald everywhere. It was 100° or higher in Dallas that summer in 2011. Hats, scarves and if I had chosen a wig was way to hot to wear for me. While I feel for the women that lose their hair and are upset by it, gor me it was freedom. Where I worked there were two men that sat along the same wall as I sat. Both were bald and they let me join us their bald club. We were the only ones that sat on that side of the office. 4 years later I have my hair back but they still consider me part of that bald club.  I keep my hair short still but not bald. 

     

    I just wanted to let people know that there was a program out there and they should ask. Trish

  • Karendmoran
    Karendmoran Member Posts: 1
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    Scared for my Sister

    My sister was diagnosed with Stage 4B Uterine Carcinoma a few months ago.  She had no symptoms and is only 50, with a young daughter.  Surgery was not an options as they needed to get the tumors riddled throughout her body (in the lymph nodes)shrunk via chemo.  She has been through 5 rounds of carboplatin and taxo and I think neuropathy may be setting in now.  She is the most amazing person I know, and I cry almost every day for this battle she is fighting, and for my niece.  Is there any hope?  I scroll around and read and look for stage 4B survivors and I just keep coming up blank...is anyone out there that had what she has now?   

  • Port39
    Port39 Member Posts: 7
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    Scared for my Sister

    My sister was diagnosed with Stage 4B Uterine Carcinoma a few months ago.  She had no symptoms and is only 50, with a young daughter.  Surgery was not an options as they needed to get the tumors riddled throughout her body (in the lymph nodes)shrunk via chemo.  She has been through 5 rounds of carboplatin and taxo and I think neuropathy may be setting in now.  She is the most amazing person I know, and I cry almost every day for this battle she is fighting, and for my niece.  Is there any hope?  I scroll around and read and look for stage 4B survivors and I just keep coming up blank...is anyone out there that had what she has now?   

    I'm still here :)

    Karendmoran I just wanted you to know. I am not NED YET but fighting. I was diagnosed at 39 years old with UPSC stage 3c. I have boys at home and it's hard and we all fight together. I've been through 8 months of chemo. (Carbo&taxol) just recently the dr added Nupagin and avastin because even after all this time my ca125 numbers are still over 50.

     

    What we have is aggressive and not for the timid. Fighting will take more than 1 person or family.. This one needs a community. Reach out you'll find the help you need. I am blessed with family and church who take me every week to treatment 2 hours away from home and last all day. I now sleep alot so my boys are becoming better cooks. 

     

    Just go slow until you find a new rhythm. Come back to these forums when you feel overwhelmed,  I do. 

  • apoohneicie
    apoohneicie Member Posts: 6
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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.

  • apoohneicie
    apoohneicie Member Posts: 6
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    Port39 said:

    I'm still here :)

    Karendmoran I just wanted you to know. I am not NED YET but fighting. I was diagnosed at 39 years old with UPSC stage 3c. I have boys at home and it's hard and we all fight together. I've been through 8 months of chemo. (Carbo&taxol) just recently the dr added Nupagin and avastin because even after all this time my ca125 numbers are still over 50.

     

    What we have is aggressive and not for the timid. Fighting will take more than 1 person or family.. This one needs a community. Reach out you'll find the help you need. I am blessed with family and church who take me every week to treatment 2 hours away from home and last all day. I now sleep alot so my boys are becoming better cooks. 

     

    Just go slow until you find a new rhythm. Come back to these forums when you feel overwhelmed,  I do. 

    Helped

    I did Taxotere and Carboplatin for 2 years and was put on Avastin. The Avastin did more to shrink my tumors and with less side effects than the traditional chemo. I hope you have a similar response!

  • AWK
    AWK Member Posts: 364 Member
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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.

    Good to see this!

    I love reading posts from long term Thrivers like you - no matter the type of cancer!  Cheering you on!  Anne