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Endometrial Cancer Stage IIIC1

Posted by mtstack @mtstack, Sep 6 10:17pm

Spotting in late April.
Referred to gynecologist after abnormal pap showing atypical glandular cells in June
Ultrasound showed endometrial lining thickened to 19.55mm
Collposcopy, scrape of cervix, and endometrial biopsy resulted in endometrial adenocarcinoma FIGO grade 3
Gynecologic consult Aug 4
Complete hysterectomy bilateral salpingo oopherectomy Aug 8
Pathology report: tumor in uterus, 97% invasion of myometrial lining, cancer cells in right sentinel pelvic lymphnode Stage IIIC1
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.

Anyone familiar with this stage and chemo treatment who might be able to share information on side effects. The more I read about chemo, the more I’m afraid to weaken my immune system. Seems like recurrence is likely and wondering about no further treatment?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for bocabird
bocabird | @bocabird | Sep 9 10:40pm
In reply to @val64 "I started noticing the symptoms of the recurrence about 9 months after finishing chemo-- pelvic pain..." + (show)
Profile picture for val64 @val64

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.

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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.

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greatgrandma2025 | @greatgrandma2025 | Sep 14 6:20pm
In reply to @val64 "Is the tumor MMR proficient (pMMR) and p53 abnormal? I assume it wasn't tested for POLE?..." + (show)
Profile picture for val64 @val64

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.

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What is EBRT

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val64 | @val64 | Sep 14 11:15pm
In reply to @greatgrandma2025 "What is EBRT" + (show)
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What is EBRT

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External beam radiation therapy

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greatgrandma2025 | @greatgrandma2025 | Sep 15 11:29am

I'm trying to decide whether to do Chem and radiation. I'm 80 years old and just found serous endometrial cancer. I was operated on and they said they got it all but want to make sure with therapy which could change my life significantly. They say I am a good candidate, but I'm thinking about quality of life, If anyone has gone thru this please give me some perspective. My prayers to all who are going thru this .

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pigglywiggly9 | @pigglywiggly9 | Sep 16 8:19am
In reply to @greatgrandma2025 "I'm trying to decide whether to do Chem and radiation. I'm 80 years old and just..." + (show)
Profile picture for greatgrandma2025 @greatgrandma2025

I'm trying to decide whether to do Chem and radiation. I'm 80 years old and just found serous endometrial cancer. I was operated on and they said they got it all but want to make sure with therapy which could change my life significantly. They say I am a good candidate, but I'm thinking about quality of life, If anyone has gone thru this please give me some perspective. My prayers to all who are going thru this .

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If you go to a place like Mayo Clinic you will be fine. Keep living. These two adjunct therapies will save your life. You are young. You’ve got this!!

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pigglywiggly9 | @pigglywiggly9 | Sep 16 11:05am

Take every treatment you can get from chemo, radiation and brachytherapy with grade III.
It will save your life! Must insist on getting them all. Go to Mayo Clinic!

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cookercooker | @cookercooker | Sep 17 11:29am
In reply to @greatgrandma2025 "I'm trying to decide whether to do Chem and radiation. I'm 80 years old and just..." + (show)
Profile picture for greatgrandma2025 @greatgrandma2025

I'm trying to decide whether to do Chem and radiation. I'm 80 years old and just found serous endometrial cancer. I was operated on and they said they got it all but want to make sure with therapy which could change my life significantly. They say I am a good candidate, but I'm thinking about quality of life, If anyone has gone thru this please give me some perspective. My prayers to all who are going thru this .

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The worst you're going to feel is nausea and fatigue, and likely GI issues (constipation, diarrhea, acid reflux). Your hair will fall out. None of these side effects are lasting. Go for it.

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carol1024 | @carol1024 | Sep 18 8:28am

I had exact same thing. Stage 3C. I had invasion and all that stuff too. Had hysterectomy on Aug 20th. Pathology report showed I was HER2+ which qualifies me for a more targeted drug. I'm starting Monday. Pathology also showed I was a stage 4 now.
My initial pap came back normal because cancer was behind the cervix. I did same chemo drugs you did too. I did immunotherapy with them. After I have 3 treatments and it looks like chemo is working, I will stop chemo and continue with immunotherapy. Getting morphine refill for the bone pain from the WBC booster shot. You should be fine if you have good immune system. I did the first chemo for 4 months and was not sick at all. I was just a little weak about day 4-5 and it lasted about 5 days. I got treatments every 3 weeks and I had about a week where I had energy before the next treatment. You'll do ok. Good luck.

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Profile picture for mtstack
mtstack | @mtstack | Sep 18 11:26am
In reply to @val64 "Is the tumor MMR proficient (pMMR) and p53 abnormal? I assume it wasn't tested for POLE?..." + (show)
Profile picture for val64 @val64

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.

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Thank you for your response. I'm so sorry to hear that the recurrence happened so quickly.
I'm still deciding what to do before my consult with the medical oncologist.

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mtstack | @mtstack | Sep 18 11:28am
In reply to @ffr "I had the carbo/taxol chemo and managed better than expected. I was fatigued and had a..." + (show)
Profile picture for ffr @ffr

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.

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Thank you so much for replying...I really appreciate it.

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