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!

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.

Hello @careng9,

My Mom had a rare type of endomentrial cancer that spread rapidly almost 11 years so, so she wasn't fortunate to have more advanced treatments that were afforded today.

Given that pembrolizumab was only approved last March for this type of cancer, I'm surprised that it was not provided to you in conjunction with carbo/taxol for your six chemo cycles.

I was diagnosed with stage IVB endomentrial cancer last March '23; had surgery in April, and started my six cycles of chemo with pembrolizumab, carbo, and taxol in June. Since October to date I've been on Keytruda aka pembrolizumab as a maintenance treatment, which I'm close to ending, after being on it for year, because it is becoming more toxic. I trust that Mayo will take good care of you. My trusted surgical oncologist told me to maintain a positive mindset as well. So I encourage you to do the same and to advocate for your own health. Keytruda affects everyone differently, so I pray that you have the right genetic disposition enhance its efficacy and can enduerebeing on it for up to two years toward becoming progressive free.

Recently, my nutritionist said eat a colorful combination of fruit and vegetables. Half of our plate should be veges, 1/4 meat, and 1/4 good protein. I also take mykind vegan multivitamin for women. Please do not hesitate to reach out to me or anyone else in this forum for support. My very best regards to you!

Sincerely,
Carol

There are some excellent books available on diet and health. A mostly plant based diet with good quality protein from plant and other sources is ideal. See Dr William Li’s books which include excellent advice on constructing a healthy diet, backed up by research. Focus on organic foods as much as possible to avoid pesticide residue and hormones in meat and dairy products. Drink plenty of good water and get enough sleep. As many here have said, don’t stress out and enjoy each day as best you can. 😊

Hi @careng9, can you please tell me the FB group you are a part of? I have been recently diagnosed. Thank you so much!

Hi @kathyrh
How are you doing? How are you feeling? I have been recently diagnosed and wanted to reach out. How did your initial surgery go? Any tips or advice are greatly appreciated.
Thank you!

@asplon Welcome to our support group here on Mayo Clinic Connect. I'm also a cancer survivor (endometrial adenocarcinoma FIGO Grade 1 diagnosed in 2019 Stage 1a, recurrence in 2021 and treated with external pelvic radiation and brachytherapy. No evidence of disease since then). May I ask what your diagnosis is? What is your treatment plan and how are you feeling today?