Endometrial Cancer Stage IIIC1

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.

The chemotherapy is what people with gynological cancer receive. The side effects will very from person to person. I had this therapy last fall. It's was tolerable. I worked with a dietician and holistic doctor during therapy. We addressed my nutrition intake to fuel my body for recovery and to hopefully allow the drugs be most effective.

@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?

I had the carbo/taxol chemo and managed better than expected. I was fatigued and had a diminished appetite the first days after each infusion. Smoothies and soup got me through. Then I would get crazy cravings and I knew that my appetite was back. Sadly, I was deemed to be chemo resistant as I had recurrence to the lymph nodes prior to my final treatment. Then I had external radiation followed by two brachytherapy treatments. Because of my high grade cancer the oncologist threw everything at me after surgery. This was the recommendation of the tumor board as well as the second & third opinions that I sought out. This was before biomarkers became part of treatment decisions.
I hope this helps.

How soon did you get the recurrence? In 2017 I had Serous Papillary cancer Grade 2- had same chemo as you and brachytherapy -Got through it all- did not react to chemo badly-only first 4 days of each cycle- and total hair loss. Weird things occured-tinnitis, severe itching in rectum, and sometimes severe stomach cramps- managed it all. Fast forward, My oncologist said just get yearly check ups with primary GYN- discovered it early with salmon colored staining and then blood in urine. Hope all goes well with you..

Do you have an academic health center near you where you can get a second opinion?

Take every treatment you can!
All of the chemo, plus radiation!
Grade 3, stage 3.
4 years ago. It will save your life. Ask for Pembro!
Go to the Mayo Clinic Rochester!

Yes. I had the same diagnosis as you: stage 3C1 endometrial serous adenocarcinoma. I had pMMR, p53 abnormal. Treated with the same chemo drugs, but did not receive the other drug you talk about (not even mentioned by oncologist). Cancer recurrence in 4 months. Went on Enhertu, which is shrinking the tumors. And while not shrinking the lymph nodes it has arrested cancer accumulation. Have just finished my 11 cycle (every 3 weeks). As I'm on a clinical study, end date will be when the cancer stops responding or begins to get worse.

I started noticing the symptoms of the recurrence about 9 months after finishing chemo-- pelvic pain and acid reflux. I was being monitored every 3 months with pelvic exams. But two weeks after the NP had declared me all clear (I told her about the pain and the reflux), I demanded a redo because I could feel a new nodule in my vaginal cuff. Since I was worried, the NP then ordered a CT scan, although she thought it was nothing.

I had similar diagnosis to yours. Had chemo and was well prepared by my oncology team and had little issues thankfully. I worked all the way through chemo and 25 EBRT and three brachytherapy. Worst side effect was fatigue. Had chemo on Thursday and worked Friday. Gave me the weekend to rest up. Did have strong cravings for Taco Bell taco two days after chemo each time. Maybe not the healthiest but sure tasted good. Take care