Uterine Carcinosarcoma, any survivors out there?

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  • Raddd
    Raddd Member Posts: 4
    edited July 2021 #162
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    Yetti

    That's amazing Yetti! Thanks for sharing! Stay strong! Were you on any specific diet.. did you experience any neuropathy or side effects while on chemo? 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited July 2021 #163
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    Yetti, So glad to see your

    Yetti, So glad to see your post. I hope you post this same news forever!

    Love and Hugs,

    Cindi

  • Kath1260
    Kath1260 Member Posts: 1 Member
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    Uterine Carcinosarcoma

    I was diagnosed with Uterine Carsinosarcoma in 2012 at age 53 after having a standard hysterectomy.  The tumor had grown more than three quarters through my uterine wall. One of the pathology reports also said there were tumor cells in my fallopian tubes. 

    I had the "icecream sandwich" protocol: taxol and ifosfamide/mesna chemo rounds alternating with radiation sessions. I had a chemo port installed prior to starting treatment. Also received Neulasta shot monthly. Treatment wasn't that bad. I never had any lymph nodes removed. 

    Today thankfully I am still well and lead a normal life. Find a doctor who you can trust completely. Skip the scary statistics. Enjoy your days as best you can.

     

  • cmb
    cmb Member Posts: 1,001 Member
    edited September 2021 #165
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    Kath1260 said:

    Uterine Carcinosarcoma

    I was diagnosed with Uterine Carsinosarcoma in 2012 at age 53 after having a standard hysterectomy.  The tumor had grown more than three quarters through my uterine wall. One of the pathology reports also said there were tumor cells in my fallopian tubes. 

    I had the "icecream sandwich" protocol: taxol and ifosfamide/mesna chemo rounds alternating with radiation sessions. I had a chemo port installed prior to starting treatment. Also received Neulasta shot monthly. Treatment wasn't that bad. I never had any lymph nodes removed. 

    Today thankfully I am still well and lead a normal life. Find a doctor who you can trust completely. Skip the scary statistics. Enjoy your days as best you can.

     

    Good news is always great to hear

    Kath1260,

    Thanks so much for checking in with us! We're always happy to hear of positive experiences after treatment, especially with aggressive cancers like carcinosarcoma. It lets others with the same type of cancer (like me) hope that we may have more time than we thought when initially diagnosed.

    As of tomorrow, it will be four years since I finished treatment. So far, NED. Since I had lymph nodes removed, I did develop lymphedema after a couple of years. But I consider that a minor inconvenience in the scheme of things. 

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    edited September 2021 #166
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    cmb said:

    Good news is always great to hear

    Kath1260,

    Thanks so much for checking in with us! We're always happy to hear of positive experiences after treatment, especially with aggressive cancers like carcinosarcoma. It lets others with the same type of cancer (like me) hope that we may have more time than we thought when initially diagnosed.

    As of tomorrow, it will be four years since I finished treatment. So far, NED. Since I had lymph nodes removed, I did develop lymphedema after a couple of years. But I consider that a minor inconvenience in the scheme of things. 

    cmb

    Congrats on the 4 years NED. We love these milestones. 

    xxoo

    Denise 

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    Wow, Kath,

    that is wonderful.  Thanks for the good dose of hope. 

  • Afoste3
    Afoste3 Member Posts: 39 Member
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    cmb said:

    Good news is always great to hear

    Kath1260,

    Thanks so much for checking in with us! We're always happy to hear of positive experiences after treatment, especially with aggressive cancers like carcinosarcoma. It lets others with the same type of cancer (like me) hope that we may have more time than we thought when initially diagnosed.

    As of tomorrow, it will be four years since I finished treatment. So far, NED. Since I had lymph nodes removed, I did develop lymphedema after a couple of years. But I consider that a minor inconvenience in the scheme of things. 

    yay cmb and Kath1260!

    Congrats to you both on these big milestones!!  Especially with a rare cancer that can be very scary at diagnosis--this will give hope to many new ladies who find their way to the board.

    Anne-Marie

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited September 2021 #169
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    Congrats Kath1260 & CMB!

    It is really, really important and special that you have both shared your news of good health, as it is a wonderful reminder to ALL of us that we can have healthy, posiitive, disease-free days following diagnosis and treatment.

    This is the very kindest type of information to be shared, and I am grateful to both of you. I'm not a person with carcinosarcoma, but I can sure relate with the positive news after my own nine-month experience with endometrioid adenocarcinoma 83% into my uterine wall and the LVSI, not to mention an oncologist who mistook himself for God. 

     

  • Lyn70
    Lyn70 Member Posts: 214 Member
    edited October 2021 #170
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    Congrats Kath1260 & CMB!

    It is really, really important and special that you have both shared your news of good health, as it is a wonderful reminder to ALL of us that we can have healthy, posiitive, disease-free days following diagnosis and treatment.

    This is the very kindest type of information to be shared, and I am grateful to both of you. I'm not a person with carcinosarcoma, but I can sure relate with the positive news after my own nine-month experience with endometrioid adenocarcinoma 83% into my uterine wall and the LVSI, not to mention an oncologist who mistook himself for God. 

     

    Hope Floats

    TY, cmb and Kath and great NED news on both of you! 

    Kath, 'skip the scary statistics' speaks to me. I keep looking at the ACA chart somehow thinking stage IIIA will have a better 5 year survival rate. You know...a updated chart for 2021. My career was in accounting with a fixation on numbers. I read about a two year mark and my LVSI being a poor prognosticator for OS. The only thing my heart yearns for is NED on another scan. Since treatment ended, I have been adrift in 'what ifs'  I have my followup with my Gyn-oncologist 10/8. I don't see the Radiologist for a followup until 11/30. I know I have a scan in my future.

    TY both for setting my boat on calmer waters for now anyway...

    cmb, I saw your post on the endometrial cancer board and your suggestion to scope out this board. You are such a help and hope. TY

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited October 2021 #171
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    Another 3A

    You and I are practically twins with our diagnoses and treatment and I'm still here after almost 5 years. It really is hard to trust that you could be cured when your cancer was not caught early. I so get that! It's going to take hearing NED time after time for you to start to hope, but the statistics you are reading are such generalities that they really aren't applicable to any one individual, including yourself. It really is a waste of time to focus on the "what ifs". Focus instead on just living your life doing what makes you happy between those appointments that bring cancer back into your face. You've earned that! It's harder when you have to go every three months, but I can't tell you what a joy that makes it when you progress to 6 month appointments! That's when I dared to start hoping and I have high hopes that all will be well for you, too. Hang in there! Scanxiety is real, but it gets less intense as time goes on.

  • Lyn70
    Lyn70 Member Posts: 214 Member
    edited October 2021 #172
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    High Hopes 2

    TY, Twin for putting all this good news out there! 

    5 years NED and switching to 6 month appointments must feel wonderful!

    I am so very happy for you and you do encourage me immensely. 

    Obviously, I need to calm myself and focus on the many good days I have. Believe me, there are many great days now that I put treatment behind me.

    I am hearing time is a huge healing factor in scanxiety and I must learn to just allow it to pass.

     

  • kathyayoub
    kathyayoub Member Posts: 3 Member
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    I’ve signed up for this site and left a post of my circumstance but I don’t see my post nor any past 2021. Did the post discontinue?

  • cmb
    cmb Member Posts: 1,001 Member
    edited May 2023 #174
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    Unfortunately, we don't see the information contained in a member's profile unless we specifically know to look at that profile. So that's why no one has responded to you yet, based on the detail you shared in your profile. But we're glad that you found your way here.

    As you've probably learned, carcinosarcoma is a rare form of uterine cancer. So there aren't a lot of posts that specifically address that type of cancer. However, I did have Stage 3B carcinosarcoma and it's been 5 1/2 years since my treatment ended, without a recurrence. You can read the details of my treatment by reading my profile. You'll see that I had a different chemo regimen than usual. Whether that made a difference or not, I don't know.

    I had consulted with the radiation oncologist just as I began chemo. So I had many months to think about whether or not I would have radiation after chemo. In my case, I finally decided that even if my cancer returned in the future, I didn't want to have any regrets that I didn't try to forestall a recurrence early on. But there are other women who made the decision to save radiation in case of a future recurrence.

    For me, radiation was much easier than chemo, although this isn't true for everyone. I did develop Lymphedema about 2 1/2 years after treatment ended. But whether that was from radiation, the removal of my lymph nodes or some combination of the two, I'll never know.

    I'm not on Facebook, but there is also a private group there specifically for women with this type of cancer.

    See https://www.facebook.com/groups/carcinosarcoma/

    In the meantime, please ask any questions here on this Board that you may have. But you may have a better response if you start a new topic as that is easier for people to spot than a comment in an older thread like this one. See the "New Topic" blue button.

    Most of the women here have had similar treatments, regardless of the specific type of uterine cancer. And so issues like treatment side effects, radiation decisions, etc. are common to many of us.

  • kathyayoub
    kathyayoub Member Posts: 3 Member
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    Thank you so much for your reply and for the details regarding your experience. I was handling all of this quite well, but this week, with all of the conversations with different radiologists and again with my oncologist, and being online about my condition more than I like to be, I am truly struggling with my strong, dismal prognosis. I have a few very high risk variables that they say increase my chances of this demon returning. Other than this cancer, I am in excellent health (only issue I have is osteoporosis, but so far that has not impacted my lifestyle in any way. If I have radiation, it will make my pelvic bones even more apt to fracture, if it doesn't cause small fissures.) I have a 21 year old daughter who has struggled emotionally in general, and needs a lot of guidance, and that is my biggest concern... or any mother's biggest concern most often. This disease is very rare, but I have been very surprised that the various doctors I have been speaking with (here in California) each mention they usually have one or two patients a month with this!

    Anyhow, I do hope I can see more posts of long-term survivors of this cancer. I was very hopeful and in good spirits, but this week has done me in emotionally. I am going to have to get back on board, because feeling this way does NOT help my cause!

    Thank you again for your response. I am not entirely sure how to navigate this site... it seems there should be posts since 2021, as there were quite a few years back when it started. Maybe I will start a new post.... we will see.

    Thanks again... Best to you on staying disease/ cancer free!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,447 Member
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    kathyayoub, welcome. I am sorry you had to find us but there are a great group of supporters here. As you saw, old posts are still here and I think starting a new topic will help all of us.

    Cancer can be quite overwhelming, and Dr. Google should be disbarred. Please know we are all a statistic of one. There is so many things being done with immueotherapy so I would suggest they run a genetic test on your cancer if possible. I do think treatment has changed over the years but I have attached the NCCN latest guidelines. These are reviewed and updated regularly.


  • cmb
    cmb Member Posts: 1,001 Member
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    There have been other women with carcinosarcoma who have posted in recent years, but they (or their family member) have generally been starting, or in the midst of treatment, so adding the search term “survivor” to your query filtered their posts out from the results you found. You can see more posts by entering just “carcinosarcoma” or MMMT in your search.

    See the link https://csn.cancer.org/discussion/325013/searching-this-site-with-examples#latest for tips on searching this site.

    Often when women complete their treatment, they may prefer to put their cancer experience behind them and stop posting on the Board. Therefore, there aren’t always a lot of comments from women who are long-term survivors from any type of uterine cancer who continue to post here. But periodically a member will report when they’ve hit a particular post-treatment milestone. Those posts tend to attract other comments along the same lines. And there are other members who are long-term survivors who respond to posts when they can shed some light on a question or share a relevant experience.

    When I had my surgery, it wasn’t as common to test for the different genetic anomalies or factors as happens now. I only learned that I have Lynch Syndrome, which does increase my chance of develop another cancer or my old cancer returning. So I get the scans or tests that are available and hope that if something pops up, it can be caught early.

    I had a dexa scan six years before cancer, which didn’t show any problems with my bone density. I got another dexa scan in 2021, which included a broader field of review and showed the same results. So in my case, radiation doesn’t seem to have affected my bones, but then I wasn’t starting with osteoporosis as you are.

    One thing you’ll see as you read posts from other women is how often immunotherapy or other treatments are being offered now, either for new patients or if someone recurs. The first immunotherapy treatment that could be used for certain women with uterine cancer was only approved by the FDA in 2017. These new therapies offer options to improve survivorship, even with the aggressive forms of cancer, that didn’t exist a few years ago. So the old statistics on survivorship may become less valid as treatments change. And as NoTime wrote, each of us is unique, and there are always those who don't fall into the "typical" statistical survivorship patterns.

    I think most of us have gone through different cycles of feeling hopeful that we'd have positive outcome from treatment and other more worrisome moments. You might find this thread of interest - you'll see how others dealt with these feelings.

    https://csn.cancer.org/discussion/comment/1693631#Comment_1693631

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    Just chiming in. I have uterine carcinosarcoma, aka uterine MMMT, old FIGO Stage 1A, dx 9/15/21. I'm NED. I rely more on the carcinosarcoma Facebook page, because I like talking to an all-GCS group, because our cancer is so different. I found this site here frustrating, though I GREATLY appreciate CMB and others on here. Best of luck to all & please come join our worldwide GCS private group on Facebook.

  • kathyayoub
    kathyayoub Member Posts: 3 Member
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    Thanks so much for this. Any specific GCS site on FB that you’re on or prefer?? I jist went on there and I think I found a few different. I’m not great w FB or technology I just out GCS in the search bar. I have stage 3c. Obviously even the little I’ve read is dismal. Still staying hopeful, but really need to be more vigilant about staying away from sweets and carbs .thank you for suggestion the FB . Please advise .

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    It' called Gynaecological Carcinosarcoma aka MMMT. WE have several hundred members worldwide who have our rare cancer. It's literally a lifesaver. It's a private group but easy to join--you just answer a few questions such as your diagnosis date. Hope to see you soon. My name is Barbara Sz---- on there. Say hello once you join. We tend to use our real names in that private group.