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Newly Diagnosed March 2021

GCS Project Home Forum EXPERIENCES WITH CARCINOSARCOMA Newly Diagnosed March 2021

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    • #10241
      Bernice
      Participant

      I’m 56 years old. I live in Wilmington NC. I just got married in 2018. I have a beautiful daughter and beautiful grandchildren!! I didn’t start really noticing symptoms until the end of January beginning of February 2021. I just thought it was a severe case of IBS. I went for trans vaginal ultrasound on 2/19, and my world hasn’t been the same. There was a 4 cm mass on my left ovary and a 8 cm mass on my right side (my right ovary and Fallopian tube was already removed 2018). I had a CT on 2/23, it showed lesions on my abdomen and surrounding my liver, along with the other masses. Thankfully,(prayers answered) I was able to get an appointment at Duke women’s cancer care with Dr Paula Lee. I saw her on 3/2 and on 3/3, I was scheduled for removal of biopsies. The only thing I knew was that I wanted whatever was inside of me out. Each day that was going by, I was so frightened, because I could see and feel my body changing for the worse!! I was praying that Dr Lee would be able to do the debulking surgery. Another prayer answered, she was able to do hysterectomy, omentectomy, removal of tiny section of my abdomen and bowel resection of my large intestine. There was also cancer cells around bladder and diaphragm. It was considered a success because all visible cancer was removed. I was also blessed that the cancer had not went into my liver or lungs. I spent 7 days in the hospital. I left on 3/10. I received phone call couple of days ago with the results of my biopsies and was given the name of carcinosarcoma!! It’s all been too much to process!!! I read Diane’s story and was so thankful for all that she shared!!! And, then was heartbroken when I realized she had transitioned. But, it seemed like she lived such a full life in those 3 years!! A true warrior!! And, I have been trying to keep my warrior mentality!! I’m trying to stay strong but there’s so many things going through my mind right now. Please, I hope to hear from someone who can help me on this journey. I’m not very good with technology!! I am on Facebook but I never use it. Hopefully, we might be able to exchange phone numbers. (The other thing I wanted to share is that my last trans vaginal ultrasound was last year 2/12/20 and it showed nothing except fibroids!) Thanks for listening and God Bless

    • #10291
      Kelly
      Participant

      Hi Bernice, I just found this website and I cannot believe how similar our stories are. I was also diagnosed in March and I also thought that I had IBS. I just tuned 59 years old I live in Kernersville, NC. I was initially referred to a gastroenterologist who saw me and immediately ordered a CT scan. The scan showed a large mass and I was then referred to Dr. Skinner at Novant. I had a total hysterectomy and appendectomy the first Friday in n April and have been going through 18 weeks of carbo/Taxol. I am responding well to the chemo but am concerned about this type of tumor and it’s reccurance rate. I am a candidate for a PARP inhibitor after initial treatment is done.
      Please send me a follow up email! I would love to connect with you!
      Blessing to you!
      Kelly

    • #10349
      Bernice
      Participant

      Kelly, so sorry, I’m just reaching out to you now. I was not active on the website, while I was going through chemotherapy. Truthfully, it was hard to process this diagnosis!! And, although I consider myself strong with a warrior mentality, the fear of this rare ovarian cancer would take hold and I would just feel paralyzed with fear!! First, I should let you know, I was diagnosed with stage 3c ovarian cancer. I finished my chemo (carboplatin and taxol), 18 weeks, on July 27. I had my ct scan on August 17, with everything looking good!! There was a 8mm lesion on my liver, but benign etiology is favored given the stability, is what was put in report. It could be a hemangioma, (a benign mass on the liver). I felt great and was just looking forward to feeling stronger and healthier each day!! I was so thankful!! Although, the lesion on my liver was always in the back of my mind. Everything was going great until October 24th, when I started feeling some discomfort and pressure, when urinating and some rectal pressure and pain. I did notice some blood in my stools and immediately made appointment with my oncologist at Duke women’s cancer center on November 2nd. A Ct and exam was done which showed a 3cm mass in my colon and changes with the liver lesion. This was some difficult news to take in. My oncologist went over different options. She was not in favor of surgery. She talked about Doxal every 4 weeks, versus ifosfamide with taxol every 3 weeks. I have to do some research on Doxal and Ifosfamide. But, there was something to be hopeful for and that was seeing if I qualify for a clinical trial. I will meet with Dr Previs (who previously was part of MD Anderson cancer center) on November 8th to discuss if I qualify. Once again, so much to process, so much uncertainty!! Im writing to you and others in hopes of hearing any insights or anything you might want to share about your journeys and how you dealt with or are dealing with recurrence? I have not lost my Faith in God and have to keep this Faith in order to keep strong and positive!!! God Bless you Kelly, and all of you beautiful, Strong, Courageous women fighting this disease!!

    • #10350
      Bernice
      Participant

      Kelly, praying that you are doing great!! And, yes, we can stay in touch through this website and emails.

    • #10361
      Barbara
      Participant
      This post is awaiting moderation.
    • #10513
      Kimberly
      Participant
      This post is awaiting moderation.
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