Anyone else with endometrial carcinosarcoma?

@pweichler Welcome to Mayo Clinic Connect. With diagnosis in March, 2025, followed by your surgery, and your treatment you have moved through all of this quickly. Personally, I went from diagnosis to an appointment with a gyn/onc surgeon to hysterectomy all within 10 days. Like you I was so grateful for everyone who cared for me.

Thank you for sharing your journey. You covered all the bases of what we all feel and worry about the most. I’m heartened to learn that you feel grateful for your treatment, your providers, your friends and family that includes your 3 dogs. You provided support to others as you proceed forward.

Are you taking time off from your work and if so do you plan to return to work?

Thank you, everyone, for sharing your experiences. I had a hysterectomy in March 2025 for UCS Stage 1A and just finished my second round of carbo/taxol with bradytherapy planned after 6 rounds. Aside from anxiety before some events like first CT scan, first MRI, getting the surgery, port in, first chemo, thought of losing hair, and wondering if a fever, rash, or body condition has to do with the cancer, I feel fortunate that after the first week after chemo (days 3-5 I had diarrhea, aching, and shooting pains that meds helped with) my appetite came back and was able to go about a normal routine. I've also been grateful for supportive friends and family (and three dogs), great providers, staff, and people I've met. Keeping focused on the day, looking for inspiration and hope, and finding fulfilling things to do keeps my mind off of the condition.

@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?

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!

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

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. 😊

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

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.

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!

@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?