GCS Home Forum Share Your Story – Your Experiences with GCS/MMMT Please share your experiences with MMMT/Carcinosarcoma

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This topic contains 34 replies, has 21 voices, and was last updated by  Admin 1 week, 6 days ago.

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  • #4691

    Admin
    Keymaster

    Thank you to those who have added your replies to this thread. However, we are working to make some changes to this section, by promoting each story as it’s own topic. That way, your replies can be linked to an individual story or post.

    We are asking those who have posted their stories to repost them in our new format. And those who want to post, pleases start a new topic. Thank you for helping us to make this forum better.

    You will no longer be able to reply to this thread, but can start your own.

    Here are the specific instructions on how to do so: http://gcsproject.org/how-to-login/#ShareYourStory

    Thank you from the GCS Team

  • #4593

    SC682
    Participant

    To add to my previous post – due to the fatigue and neuropathy it is very difficult to adhere to a regular schedule. I have other health issues as well so I have decided that I can’t return to work so I am retiring early. This is not exactly how I pictured retiring after a 42 year career but I am thankful for every day God gives me.

  • #4589

    SC682
    Participant

    I am 60 years old and I was diagnosed in May 2017 with uterine MMMT/carcinosarcoma . My gynecologist referred me to Dr. Joyce Barlin at Women’s Cancer Care Center at St. Peter’s Hospital in Albany, New York which is just a 40 minute drive from my home. I had a robotic hysterectomy on June 9, 2017 and was staged 3C1. Two lymph nodes were removed and the cancer was found in just one. I started carbo/taxol treatments, one very twenty-eight days for a total of six. MY CA125 before surgery was 52 and after 1st treatment it was 18.5 and after my last treatment it was 13 and my CT scan was clear. I think I did well through my treatments after hearing about the hard times that others have had. My last chemo treatment was October 19, 2017. I still have the fatigue and some neuropathy in my feet but overall feeling pretty good now. I did meet with radiation oncologist and he suggested 30 rads but I chose not to do the radiation based on possible short/long term side effects vs. the reward. My gyn/onc/surgeon didn’t push for the radiation. I see my gyn/onc/surgeon on February 13th for my 3 month follow up since my last chemo.

  • #4584

    Shcolwell
    Participant

    If I were in Wisconsin, I would head over to Mayo for a second opinion. It is so important to feel confident in your treatment, regardless of what protocol your current doctor has you on. If you can, try a doctor or a treatment center with lots of experience in GCS. Mayo would qualify–and there may be other folks on this list who know of doctors who are closer to you.

    As far as statistics go–this is a “rare” cancer–and our oncologist is always saying that Karen is a statistic of one–she makes her own curve! She is Stage 4 uterine carcinosarcoma, diagnosed in 2011. So I wouldn’t go searching the internet for statistics–I would spend that energy finding a second opinion! Cheers–Suzanne

  • #4576

    Barbara Zielewski
    Participant

    I was diagnosed in October with MMMT Carcinosarcoma. Stage 3. I live in a very small town in Wausau WI and am not confident that I am getting the correct treatment for this cancer. I have little faith in my cancer Dr. as he is unable to answer a lot of my questions. He is also a little arrogant and his answer to me when I asked him if he consulted with anyone else, he said ‘I don’t consult, Dr’s consult with me”. I started chemo and I am two sessions in with 6 more to go. I am looking outside of my area, for a second opinion, and or to just ask another Dr. if I am being treated properly. I am considering cancer centers of America, or Mayo, Froedert. or Madison University. Does anyone know where to go to see statistics of our type of cancer?

  • #4542

    Elayne Adams
    Participant

    I was diagnosed in November 2017 with high grade ovarian: 70% endometrioid adenocarcinoma, FIGO grade 3, 25% serous, high grade, 5% clear cell. This is from my surgical pathology report. Grade 2c. Am currently receiving chemo with carboplatin and taxol.

    I have called and faxed records to Dr Birrer in Birmingham asking to see him for a consultation/second opinion. So far, no luck with this, have left several messages with Jeannette.

    Diane, are you in touch with him or know if he’s seeing patients there yet? If not, do you suggest anyone else? I live in Houston, had surgery by a GYN oncologist and chemo by Kelsey-Seybold, my Medicare provider. I’m an RN and feel confident that my care most likely wouldn’t be different at MD Anderson.

    Any guidance or advice? Thanks!

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