Endometrial Cancer: Noticing my blessings every day

@heidivet I'm in exact same situation as you; diagnosed with Serous Endometrial Intraepithelial Carcinoma Stage 1a in June, with a few cells having invaded the musular lining. Surgery included a radical hystorectomy and removal of areas where the cancer was likely to have spread microscopically (like the omentum). One oncologist at MSK and another at UC Irvine said with a 20-30% chance of recurrence, just "wait and see" (no recommendation for chemo). However another doctor at UCLA said to do chemo so that recurrence is lessened by another 15%. I was thoroughly confused and went back and forth for months. Adding to the confusion were second and third opinions that kept changing my diagnosis; from precancer, to cancer only in the uterine lining, to a few cancer cells having gone beyond the uterine lining into muscular layer. I read as many posts as I could on sites such as this one and even discussed scenarios from the posts (thanks to people like alohman) with my oncologist. The UCLA doctor who recommended chemothetapy also gave me indepth studies to read and I reviewed them with the other oncologist who recommended wait and see. Through it all, with my brain totally exhausted, I ultimately decided to wait and see. My own logic was that no cancer was found anywhere else in my body, the areas where it was likely to exist microscopically were already removed, the extra 15% benefit did not guarantee non-recurrence nor outweigh the potential damage from the chemo itself, and it increased the chance of me becoming platinum resistent sooner if recurrences do happen later. I found many posts supporting both sides, so making this decision was really tough. I'll never know if it's best because if I do recurr, it could"ve recurred even with chemo. I just had to make a decision and stick to it. There's no clear right or wrong for people in our situation, unfortunayely.

@alohman08 thank you for your reply. You have been through a lot but it sounds like you are maintaining an excellent quality of life in spite of it. Wishing you all the best. I don’t have all the molecular info yet on my cancer. My CA number before surgery was normal so I guess for better or worse it’s not a marker for my cancer.

@inquirer thanks for replying. There is a difference between our cancers. Mine is carcinosarcoma UCS vs yours which is serous. I just read a study from the NIH where they did a retrospective study and concluded that USC is more aggressive than serous. I hadn’t looked this up until now but your post prompted me to do so, so thanks for that and best wishes for continued success. Have you changed diet or lifestyle at all to improve your chances?

@heidivet I'm in exact same situation as you; diagnosed with Serous Endometrial Intraepithelial Carcinoma Stage 1a in June, with a few cells having invaded the musular lining. Surgery included a radical hystorectomy and removal of areas where the cancer was likely to have spread microscopically (like the omentum). One oncologist at MSK and another at UC Irvine said with a 20-30% chance of recurrence, just "wait and see" (no recommendation for chemo). However another doctor at UCLA said to do chemo so that recurrence is lessened by another 15%. I was thoroughly confused and went back and forth for months. Adding to the confusion were second and third opinions that kept changing my diagnosis; from precancer, to cancer only in the uterine lining, to a few cancer cells having gone beyond the uterine lining into muscular layer. I read as many posts as I could on sites such as this one and even discussed scenarios from the posts (thanks to people like alohman) with my oncologist. The UCLA doctor who recommended chemothetapy also gave me indepth studies to read and I reviewed them with the other oncologist who recommended wait and see. Through it all, with my brain totally exhausted, I ultimately decided to wait and see. My own logic was that no cancer was found anywhere else in my body, the areas where it was likely to exist microscopically were already removed, the extra 15% benefit did not guarantee non-recurrence nor outweigh the potential damage from the chemo itself, and it increased the chance of me becoming platinum resistent sooner if recurrences do happen later. I found many posts supporting both sides, so making this decision was really tough. I'll never know if it's best because if I do recurr, it could"ve recurred even with chemo. I just had to make a decision and stick to it. There's no clear right or wrong for people in our situation, unfortunayely.

@heidivet good morning just an FYI concerning CA125 .. prior to surgery my number was 10 .. go figure ??? Today it is 15 and has been 15 since treatment with enhertu brought it from 77 to 15 .. apparently my cancer shares a lot in common with ovarian cancer ... very sensitive to CA 125 marker .. good luck !

@inquirer My prayers for you as this whole thing is so stressful. I hope you have no recurrence nor any problems with the chemo you had. Your story is giving me courage to my my decision in February, so far numbers are good and no metastases but as we all now nothing is concrete so we must move on and stay positive. We are alive!! Thank you for sharing.

@inquirer thanks for replying. There is a difference between our cancers. Mine is carcinosarcoma UCS vs yours which is serous. I just read a study from the NIH where they did a retrospective study and concluded that USC is more aggressive than serous. I hadn’t looked this up until now but your post prompted me to do so, so thanks for that and best wishes for continued success. Have you changed diet or lifestyle at all to improve your chances?

@heidivet good morning just an FYI concerning CA125 .. prior to surgery my number was 10 .. go figure ??? Today it is 15 and has been 15 since treatment with enhertu brought it from 77 to 15 .. apparently my cancer shares a lot in common with ovarian cancer ... very sensitive to CA 125 marker .. good luck !

@heidivet Welcome to Mayo Clinic Connect and to our Gynecological Cancers support group. You've already received some supportive and helpful replies.

I wanted to jump in and say that you are so correct about the difference among cancers. While we have endometrial cancer in common, the different kinds of cancers, and in particular which cancers are more aggressive than others means that our treatments will vary. Many of us have sought out second or third opinions on treatment options and this has helped us to decide what we want to do.

When I had a recurrence of endometrioid adenocarcinoma in 2021 I received a referral to Integrative Medicine. I'm still a patient at Mayo Clinic in Rochester and I continue to meet every 6-12 months with my Integrative Medicine physician. Her subspeciality is gynecological oncology and then she trained in and started the integrative medicine program at Mayo. She reviews all of my information and makes recommendations on diet, exercise, and lifestyle. I have added and dropped supplements at her recommendations, and made efforts to change my diet.

I am tagging @denisestlouie who made and continues to work at the recommendations she received for diet and lifestyle changes.

Have you made changes to your diet or lifestyle or sought out recommendations for yourself?

@alohman08 Mine was 6 when the cancer was first discovered, and without any treatmement whatsoever, moved down to 3 just before surgery. The belief is that my body just hadn't recognized the cancer yet, so I don't know if CA125 is a good matker or not. I'll only know if the cancer returns.