Endometrial Cancer Stage IIIC1

Yes we have to be our own advocates - too bad the actual oncologist could not do the examination. Here in South Florida, the NP's are replacing the Dr. for appointments due to shortage of Dr"s from everyone moving down here. Did you get CA 125 blood tests? That usually is a good indicator. In the beginning I was getting them every 6 months. Wishing you the best outcome.

Is the tumor MMR proficient (pMMR) and p53 abnormal? I assume it wasn't tested for POLE?

I had a stage 1B (85% myometrium invasion) Grade 3 endometrioid tumor that was pMMR and p53 abnormal. No tumor in lymph nodes. I had 6 cycles of carboplatin/paclitaxel plus vaginal brachytherapy. The cancer recurred, spread throughout my abdomen, in less than a year. This is something that you want to do everything possible to avoid.

I wish I had had carbo/taxol plus EBRT. Carbo/taxol is definitely no fun, but it's tolerable. I've had a total of 14 cycles. During the first 6, I mostly stayed home, but during the second 8 (after the recurrence), I went out and enjoyed life during the second and third weeks of each cycle. (The first week is pretty miserable.). I didn't have EBRT, but that would undoubtedly make you feel worse.

I didn't realize it at the time, but right after surgery was my only opportunity for EBRT. People who have a recurrence as a single tumor, say in the vaginal cuff, are given radiation after recurrence. But I wasn't eligible for radiation after recurrence, since I had tumors throughout my peritoneum.

@mtstack Welcome to Mayo Clinic Connect and to our Gynecological Cancers support group. @val64 and @denisestlouie are members who have considerable experiences to share with others.

You wrote "Consult Sep 2: oncologist recommended platinum systemic therapy of six cycles of carboplatin and paclitaxel. Oncologist doesn’t recommend EBRT even though tumor board recommended a referral". I wonder why your oncologist disagrees with the tumor board? When a patient's case is brought before the tumor board it allows an advisory committee of oncologists, pathologists, radiation oncologists and other physicians involved with cancer care to weigh in and provide recommendations.

@denisestlouie and @val64 have been the models here for advocating for themselves. I know how hard it is to ask questions and challenge your doctors. But I force myself to do it as it's my body and my life. I need to know I'm doing the right thing for me.

What do you think you'll do next?

Thank you for your reply. Still researching and thinking about my decision.
Worried because it seems recurrence seems high whether I have chemo or not.

Thank you for your reply. Still researching and thinking about my decision.
Worried because it seems recurrence seems high whether I have chemo or not.

I'm not really sure about the pMMR and P53.
My pathology report says pMMR, ER positive, p53 wild type.

Hi. I was diagnosed in late Jan with very similar case to yours. I had full hysterectomy surgery, with removal of ovaries, fallopian tube, and a portion of my cervix. I had about a month th of recovery, then started chemo. I had 6 cycles of carbo/paclaxital one treatment every 21 days. I was okay until 3rd cycle. I noted the yucky days lasted longer, and I found it difficult to eat. Yogurt and Ensure we're helpful. I had 3 blood transfusions after cycle 3 as my blood was low and I was weak. However, my oncologist was able to reduce the harsher drug as CT scan showed good progress. After chemo, I had about another month of recovery time, then had a PET scan. It showed no more cancer, but my radiologist suggested 25 external radiation treatments and 2 Bracchy treatments after that as preventative for recurrence. I begin those next week. Aside from losing all my hair and having some lingering neuropathy in hands and feet, I feel very good these days. I had a lot of support, I stayed positive, and I trusted my medical team. I am in western Canada, and in spite of what many believe about our socialized medicine, I had the best experience, and did not cost me a penny. Good luck with your journey. You will make the decisions that are best gor you, and it is amazing what our bodies can do!

Thank you for your reply. Still researching and thinking about my decision.
Worried because it seems recurrence seems high whether I have chemo or not.

Where in western Canada?I'm in BC.