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Ovarian carcinosarcoma: stage 1, grade C

GCS Project Home Forum Share Your Story Ovarian carcinosarcoma: stage 1, grade C

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    • #5780
      Paule Miquelon
      Participant

      Hi everyone,

      Just been diagnosed with OC, after having a complete hystetectomy (the only thing they left me is my right ovary) on March 27. I am 44 years old. I meet my oncologist last week and the final biopsy of the cyst they removed from my left ovary revealed it was a carcinosarcoma. My stage is 1A, grade C. The next step for me is thus 6 rounds of carbo/taxol, every three weeks.

      Since last week, I did a lot of research on the net about carcinosarcoma OC and what I found is quite scary, given its a very agressive type of tumor and it is also rare, I understand they don’t have much data on it so far. Plus, the statistics on prognosis are so scarced, I don’t think it’s a good idea to rely on them to have an idea about what to expect.

      I’m thus writing a post with the hope of getting advice and testimony of those of you who had to deal with this type of cancer at an early or more advanced stage. If you have any info to share about successful treatment, type of chemo you had and the way you cope with the disease, I would be more than happy to ear from you😉. I’m writing today hoping that I will also be able (in a couple of months) to give a positive and encouraging testimony to anyone who is dealing with an OC carcinosarcoma ovarian cancer.

      Thanks for reading me😇.

    • #5932
      Kathy
      Keymaster

      Hi Paule,
      Thanks for joining the Forum. I hope that you are doing well. It is a very scary diagnosis. Some things to keep in mind – you should be treated by practitioners that have MUCH experience with this rare disease (and not seeing just a few cases a year). It’s important to get a second opinion by meeting another expert in person who can examine you, review your test results, and so on.

      Sometimes the usual treatment that is offered doesn’t work, as some tumors are resistant to the therapy. This is when it is especially vital to have an expert on your team. Please take some time to watch the interviews with experts on our website. They discuss current treatments, the need to advocate for yourself, and the need for more focus (researchers with money to do the research!) on carcinosarcoma. It’s good news that your disease was caught so early! Diane would have told you to keep your spirits up (ignoring the statistics), keep your family or friends with you to help you advocate for the best care and embrace everyday!
      All the best,
      Kathy

    • #5938
      ann
      Participant

      Hello! This is a scary disease! I am so thankful for a place to go and talk about it with others who are walking the same path – maybe at different places – but walking the same path! I had a total hysterectomy at 62 (a little over a year ago). I took 6 chemo treatments three weeks apart. I was blessed not to have nausea or pain. I took steroids before and during each treatment to help prevent the side-effects. I did (and still am) dealing with fatigue. I have been cancer free for six months now. Please let me know if I can be of any help to you!

      Ann

    • #5956
      Helena Gvili
      Participant

      Hi Ann,

      We are very grateful to this web site and the people who are behind it.
      My mother, who is 84, has the same stage as you and just received her 4th chemo treatment (every three weeks as well). I am so happy you have been cancer free for 6 months.

      Did your doctors recommend any type of immunotherapy as well?

      Helena

    • #5958
      Janet In LA
      Participant

      I was diagnosed stage 1 Fallopian tube carcinosarcoma last October, 2017. I had a TAH BSO for abnormal bleeding and that’s when they found the tumor. I had 6 rounds of chemo and returned to work this week. The meds given for nausea worked well. Feeling good. Little tired and my feet are a little numb and cold. I plan to check this website as I have not yet met or heard about anyone with Fallopian tube carcinosarcoma. My surgeon and my oncologist have only seen one or two cases in their careers and I am at a major medical center in LA. I too am glad this website is available and if there is anything I can answer, let me know. Janet

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