Scared Mom

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Cmom
Cmom Member Posts: 5 Member
edited December 2023 in Uterine/Endometrial Cancer #1

My daughter got a diagnosis Monday of Cancer after a DCS. On Tuesday the results came back as Carcinosarcoma. At first, on Monday, I just kicked into high gear of we are going to kick this, no problem, but after reading the survival rate, I cannot keep my mind from going to a very dark place. I don't have a great support system, but am happy to report that my daughter does. I have not been able to focus at all, so trying to keep my mind preoccupied isn't working. What are some of the things you, or your family did to help keep their minds off the worst case scenario.

My daughter is 32. So, I am trying to tell myself that the survival rate does not take age into consideration. Most women with this cancer are over 60.

Thanks for listening.

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  • Forherself
    Forherself Member Posts: 966 Member
    #2
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    Welcome Cmom. Sorry to read about your daughters cancer diagnosis. That is unusually young to get endometrial cancer. I wonder if it is a different kind of cancer, cervical maybe? Carcinosarcoma includes the muscle of the uterus. It has been called MMMT in the past. You may know that now she will be referred to a gynecologist oncologist to discuss treatment. Surgery will determine the stage or how far along the cancer is, and then the doctor will discuss treatment with your daughter. The treatment will differ if your daughter wants to have more children. I am not familiar with the prognosis for early stage carcinosarcoma, but you may be reading old studies and treatment and survival has improved. I find the old studies did not separate out the different types so are not reliable for a specific type, in my opinion. They used to group all endometrial cancer together for survival rates, and now they know each type is different, and each case is different depending on the genetic mutations each person has. I guess my message is you have no way of knowing at this stage. I would hope for the best. When I was waiting I made flannel pillow cases. All my young friends loved them. I went to new places, new walks, it seems to keep you from dwelling on dark places. Good luck to your daughter. We will help with any questions we can.

  • Cmom
    Cmom Member Posts: 5 Member
    #3
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    https://csn.cancer.org/discussion/comment/1710191#Comment_1710191

    Thank you. She is seeing her gynecological oncology Dr. this morning. I am anxiously awaiting next steps. I am thankful she has a strong support system in her co-workers and friends. I just want to get going as soon as possible to get this under control.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    #4
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    Cmom, your reaction is completely understandable! While, unfortunately, cancer can strike at any age, it sounds like she had a doctor who didn't say it was nothing because she wasn't "old" enough, AND that she is working with a gynecologic oncologist is the specialist she wants on her case.

    As Forherself said, we are here if you or your daughter have questions. She is a statistic of one and data Dr Google has tends to be old. Treatments have changed over the years and they continue to everyday.

    It is overwhelming for everyone involved, but try to take a breath and know this is a journey. Plenty of people here to support you as well.

  • Cmom
    Cmom Member Posts: 5 Member
    #5
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    Update:

    My daughter saw here Gynecological Oncologist today and she is scheduled for an MRI this afternoon, and Surgery next week. She has asked me to stay with her in Milwaukee (I live about an hour North of that) for the recovery period.

    I am hoping the MRI doesn't show anything more scary. I am terrified I will bring my fears with me, and she will feed off them.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    #6
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    Hey Cmom, I hate to 'assume' but when you say surgery is that a complete hysterectomy you are talking about? I would share with you the thread, while old, has a lot of pre/post surgery tips.

    https://csn.cancer.org/discussion/320841/tips-for-surgery-and-after

    I think if you click on the title is will take you there.

    Also, patients all realize their loved ones who are there for them are as scared. It's ok. How you can help in the recovery from that surgery will help you.

  • Cmom
    Cmom Member Posts: 5 Member
    #7
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    https://csn.cancer.org/discussion/comment/1710232#Comment_1710232

    Full... or radical. They are taking the uterus, ovaries, fallopian tubes and cervix.

    She's getting a CT scan now. I don't think she'll get results till next week. I am moving to her place on Sunday and planning to stay through her recuperation. The Dr said they want her to start Chemo 3 weeks after surgery, so we'll see how she does with that. I may stay longer.

  • Cmom
    Cmom Member Posts: 5 Member
    #8
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    https://csn.cancer.org/discussion/comment/1710233#Comment_1710233

    Thanks for the link. I am going there now.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    #9
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    I suspect she will presented with a 'plan' on treatment. I can't remember how long that was after surgery. I hope they do a genetic assay as well since there is so much more they know now about mutations that respond differently to treatment.

    If/when they talk about chemo, here is another link, that while old, had a lot of tips in it.

    https://csn.cancer.org/node/296461

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #10
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    Cmom,

    Our ladies have given you and your daughter a great starting place. I will add that you might want to get a 2nd opinion from a large cancer center confirming the pathology, and treatment plan, especially since carcinosarcoma is so rare. I had local doctors initially diagnose me, but had Mayo reconfirm the pathology and I ended up getting treatment there. Most will do a remote 2nd opinion on the pathology, tests and scans.

    Also a great resource is the NCCN https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf

    Section 5 is all about uterine sarcoma.

    Good luck and let us know how she and you are doing.

    xxoo

    Denise

  • Icantbelieveit
    Icantbelieveit Member Posts: 27 Member
    #11
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    Hey Cmom, sorry to hear about your daughter. I know the information is overwhelming but I found if I broke everything down to steps it was easier to navigate all of it. I concentrated only on the next test or result and when I got those results I would look at what the possible choices I would be presented with then. She may be different and like to plan for all possibilities from the outset, I don't know.


    You will be such a support for her during recovery, please know how important that is. My mother passed away in 2012 (not of cancer) and I remember wishing she was here for my recovery. I found this video of supplies needed after hysterectomy valuable!

    https://youtu.be/qJq8DhqKZnw?si=v-hCElmIJjV8E2vK

  • cmb
    cmb Member Posts: 1,001 Member
    #12
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    I've been away from the Board for a while so this comment is several weeks after you last posted. I hope your daughter's surgery went well and that she's doing as well as can be expected with her initial chemo treatments.

    I was diagnosed with Stage 3B carcinosarcoma in November, 2016, with surgery, chemo and radiation afterwards. I have not recurred with cancer since my treatments ended in 2017. And I didn't receive any of the newer therapies that are now available. So keep in mind that even aggressive forms of cancer can be treated successfully.

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