Anyone else with endometrial carcinosarcoma?

@careng9 Welcome to our support group. You will get emotional support and others will share their cancer journeys. Would you like to share more of your journey? As you are now starting at Mayo have you already been seen there and have a treatment plan in place?

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.

@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?

I think I’ve always been an optimist. I have an incredible husband and a very supportive network of friends and family. It helped to journal this journey on Caring Bridge to keep everyone updated. It has also helped that I’ve had relatively few side effects from all of this. And then there is my weird sense of humor that I have maintained. I love my life and have a deep sense of gratitude for all the love and support and the other health aspects I’ve been able to maintain. I have my down moments of course, but don’t dwell there. None of us have any guarantees. This is what I have to deal with. Just had lunch and giggles with a new friend I met at chemo months ago!