1. < Gynecologic Cancers

I have Stage 1A grade 1 endometrial cancer

Posted by jessy0628 @jessy0628, May 8, 2023

Hi all, i am 46yo, 3yrs menopaused diagnosed with endometrial cancer a day before my birthday on January. Its my 5days post op today had my total hysterectomy. When i woke up this morning i saw the email from my hospital that i have a pathology report at my chart, i Prayed hard before opening and found negative tumor cells to all except from my uterus with 2cm thickness. The stage says Stage 1A grade1. I hope this is a good sign that no more further treatments needed. I will be seeing my gyne onco next week for my follow up check up.

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debra54 | @debra54 | Nov 21, 2023

What was your early signs for the ultrasound to be ordered?

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2 replies
amt1105 | @amt1105 | Nov 21, 2023
In reply to @naturegirl5 "@amt1105 I apologize for the delay in answering your question. Somehow I missed it. My «..." + (show)
@naturegirl5

@amt1105 I apologize for the delay in answering your question. Somehow I missed it.

My « tumor » was visible as thickened endometrial lining on the ultrasound. I’d need to get my records out to see what the thickness was however the radiologist who read the scan noted that the thickened endometrium was « suspicious for cancer ». That comment did not alarm me at the time because I knew that this is how radiologists make sure their remarks and diagnoses cover all the bases.

Does this answer your question?

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Thank you for answering. My tvus came back with a thickness of 5.7mm. My surgery is scheduled for next Tuesday to remove everything I have left. I have 3 fibroids, going for an mri today to make sure they are actually fibroids. I had a tvus at the end of March and then another one three weeks ago, both said fibroids. The second tvus scan did say they got a little bigger, so not sure what to think. My specialist seemed very optimistic, kept telling me these are pre-cancerous cells, but reading everything here not sure what to think. My anxiety has been through the roof and everything is happening so quickly. I just want it over at this point.

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Helen, Volunteer Mentor | @naturegirl5 | Nov 21, 2023
In reply to @debra54 "What was your early signs for the ultrasound to be ordered?" + (show)
@debra54

What was your early signs for the ultrasound to be ordered?

Jump to this post

@debra54. I had experienced post-menopausal bleeding that showed up twice. I was 10 years post menopausal and knew this was not normal. So, I made an appointment with my gynecologist and after examining me and listening he referred me for an ultrasound. I found out later that’s post-menopausal bleeding is an early sign for uterine cancer. I’m glad I went in as soon as I saw the bleeding because the uterine cancer was caught at a very early stage.

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crowleykid | @crowleykid | Nov 22, 2023
In reply to @naturegirl5 "@crowleykid My I ask what kind of endometrial cancer you were diagnosed with? My initial diagnosis..." + (show)
@naturegirl5

@crowleykid My I ask what kind of endometrial cancer you were diagnosed with?

My initial diagnosis after hysterectomy was endometrial adenocarcinoma Stage 1A. My surgeon gave me a Survivor Plan that provided all of my paperwork, including the pathology, and follow-up schedule. It indicated about a 5% chance of recurrence. Well, like you, I was in the 5% and within two years I had a recurrence of the same kind of cancer. I had radiation therapy and so far I’ve had no evidence of disease. My next follow-up is in January.

After 2 years since the recurrence I don’t dwell on the cancer as much. I exercise like you, and I have hope.

I’m glad to know that the most recent tumor is shrinking and that you feel good. Walking daily when you have pneumonia tells me that you indeed are staying positive.

How many more treatments will you have in your most recent clinical trial?

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@naturegirl53 Wow, we have identical diagnoses: The cancer was in the Endometrial lining of the uterus and it was adenocarcinoma Stage 1A. I'm very sorry to hear you were in the 5% as well. The first recurrence for me was 6 months after surgery. The 2nd recurrence (current state) was 6 months from "CR - complete response".
There is not a fixed # of treatments, my oncologist said: stay on it as long as it works which could be for life. She has other patients who have been on that drug combo for years.
But ... they also said: we don't want to remove your chemo port, just in case you need a new treatment that appears.
Thank you for your message. I wish you all the very best. I don't think about the cancer nearly as much as I did at first. Right now it's the pneumonia and blood clot on my mind, but worrying gets me nowhere.

Just a side note: the initial "stage" is no longer used because of the recurrence. In reading the Clinical Trials, I am grouped with Stage 3 or 4, so Stage 1A sounded good before the recurrence.

I hope this helps, Lizzz

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crowleykid | @crowleykid | Nov 23, 2023
In reply to @debra54 "What was your early signs for the ultrasound to be ordered?" + (show)
@debra54

What was your early signs for the ultrasound to be ordered?

Jump to this post

@debra54 The only sign was a one-time occurrence of post-menopausal bleeding. I went to my computer and then called an OB/GYN (I didn't even have one!). He tried to get a tissue sample in his office [major OUCH], I cried in the car afterwards. The ultrasound didn't help, so he scheduled a D&C procedure in the surgical realm. There was so much blood, I guess he was shocked, but was able to get a tissue sample. Then the phone call came and off I went for a "total" hysterectomy August 2021 at a major medical center 5 hr drive from home.

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crowleykid | @crowleykid | Nov 25, 2023
In reply to @naturegirl5 "@crowleykid My I ask what kind of endometrial cancer you were diagnosed with? My initial diagnosis..." + (show)
@naturegirl5

@crowleykid My I ask what kind of endometrial cancer you were diagnosed with?

My initial diagnosis after hysterectomy was endometrial adenocarcinoma Stage 1A. My surgeon gave me a Survivor Plan that provided all of my paperwork, including the pathology, and follow-up schedule. It indicated about a 5% chance of recurrence. Well, like you, I was in the 5% and within two years I had a recurrence of the same kind of cancer. I had radiation therapy and so far I’ve had no evidence of disease. My next follow-up is in January.

After 2 years since the recurrence I don’t dwell on the cancer as much. I exercise like you, and I have hope.

I’m glad to know that the most recent tumor is shrinking and that you feel good. Walking daily when you have pneumonia tells me that you indeed are staying positive.

How many more treatments will you have in your most recent clinical trial?

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You wrote: "May I ask what kind of endometrial cancer you were diagnosed with?"
I'm sorry, but my answer is: I don't know, unless you mean at the cellular (MMR) level? There are 2 types and pMMR as in "proficient" is what I had and that's not good.

Your other question related to how many treatments or how long and the answer is: I'll be on the 2 drugs as long as they continue to shrink or maintain the tumor and prevent new ones.

Abemaciclib (Verzenio) and Letrozole are the drugs. They were tested at Dana Farber, Boston in 2022 with good results.

I hope this helps and I'm wishing you the very best!

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