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Anyone else with endometrial carcinosarcoma?
Gynecologic Cancers | Last Active: Aug 20 8:45am | Replies (7)Comment receiving replies
I had minimal spotting in July of 2022 and my primary care doc did a biopsy and I found out I had an aggressive endometrial cancer. Met with gynecology oncologist and had full hysterectomy and that pathology report indicated carcinosarcoma. I was stage 1A but still did 6 rounds of carbo/taxol followed by some brachytherapy. In May I felt a lump in my stomach that indicated a recurrence and had surgery to remove mass and it was successfully removed with negative margins. Unfortunately this cancer just keeps coming back and next round of chemo w herceptin was ineffective and keytruda/lenvima which I was just on had mixed results at best. So I was off to Mayo last week for scans and consult. Scans showed progression and we had great visit talking about next steps. I’m off all treatment now in preparation for next steps- possibly a clinical trial. Throughout all of this, I feel pretty good and have had minimal side effects. I’m on the treadmill almost every day, appetite is good and attitude remains positive and optimistic. I am in a FB group for this cancer with women from all over the world but am always looking to connect with others with this rare aggressive cancer.
Replies to "I had minimal spotting in July of 2022 and my primary care doc did a biopsy..."
recently diagnosed this past spring with stage IVB Carcinosarcoma. Surgery early april, started chemo/immuno therapy 5/7 - one round to go. 9/23 have follow up CT Scan & go from there I suppose. So much to absorb in such a short time is overwhelming for me. Minimal side effect from treatment so far. Extreme tiredness, weakness and overall feeling unwell starting 2-3 days after treatment. Light neuropathy in toes on both feet but not significant (slightly numb is all). I live in North Carolina, USA .
Im in my "rookie year" here where EVERYTHING is new to me.
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@careng9 The past two years since the initial diagnosis must be very difficult for you. I found that once I was in treatment (initial diagnosis in 2019 of endometrioid adenocarcinoma, FIGO 1, Stage 1a; recurrence in 2021) that I actually felt better and more positive. I knew my cancer care team at Mayo Clinic was in my corner and everyone on those teams spent time with me to answer my questions and provide information about what to expect.
I'm going to tag a few members of our Support Group who have shared their journeys with endometrial carcinosarcoma. @sam1108 experienced this with her grandmother; @wuw8; @ihndz
When you don't yet have a treatment plan and are wondering, what's next? Well, that anticipatory anxiety can be awful. That's me anyway. That daily exercise on the treadmill and good appetite with healthy food is encouraging and I imagine very helpful for you. How do you maintain your positive and optimistic attitude?