Relapse endometrial cancer

Posted by samaco @samaco, Nov 15, 2020

So, I was diagnosed w/stage 1A grade 1 endometrial cancer in May of 2018. After a laparoscopic hysterectomy, all was fine until relapse diagnosed 3 weeks ago. The tumor didn't even show on MRI, and the PET showed nothing. I am about to start radiation. Is there anyone out there in similar situation now or w/past experience? If so, I'd love to hear from you.Thank you.

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@paz1956

Has anyone had vaginal brachytherapy right after a hysterectomy? If so did you have a reoccurrence? Or you did not have a reoccurrence?I’m 68 stage1a2 not sure if I want/should get the VB treatments. For some reason VB treatments scare me, terribly

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@paz1956 I looked through your earlier comments and could not figure out if you have already had a hysterectomy? Since you know that you are Stage 1a I'm thinking you have already had a hysterectomy as the stage is assigned in the pathology lab by the pathologist who looks at the tissue that was removed during surgery. What does your oncological surgeon recommend?

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@riverland889

It’s a DNA TEST matched to dna of your tumor

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Has anyone had vaginal brachytherapy right after a hysterectomy? If so did you have a reoccurrence? Or you did not have a reoccurrence?I’m 68 stage1a2 not sure if I want/should get the VB treatments. For some reason VB treatments scare me, terribly

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@naturegirl5

@riverland889 Those are both excellent places to get your second and third opinions. Will you let me know what you learn?

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Yes I will

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@angierivas1

What is a positive signatera test? I haven't heard of it. Thanks. Hope the new treatment works great for you. 🙏

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Just to elaborate a bit, Signatera tests for tumor DNA in your blood. So it can be used frequently for surveillance.

First, the company sequences the DNA from your tumor surgical specimen, looking for mutations, and then it designs a test just for your tumor that detects those mutations.

My impression from reading the pancreas cancer board is that for them, normal tumor markers start to rise significantly before the Signatera comes up positive. I had a different blood tumor DNA test after my cancer recurrence was clearly visible by CT scan, with several sizable tumors, and it didn't detect anything.

So testing for tumor DNA in your blood is a nice idea, but it seems to have a problem with low sensitivity/false negatives in many cases.

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@riverland889

Waiting for notification of appt time with Sloan Kettering, and have virtual next week with Mayo
For now I’m continuing with Jemperli (immunotherapy)

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@riverland889 Those are both excellent places to get your second and third opinions. Will you let me know what you learn?

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@angierivas1

What is a positive signatera test? I haven't heard of it. Thanks. Hope the new treatment works great for you. 🙏

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It’s a DNA TEST matched to dna of your tumor

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@naturegirl5

@riverland889 Thanks for coming back and filling me in. Getting another medical opinion sounds like a great idea. When will you go to your second and third opinion appointments?

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Waiting for notification of appt time with Sloan Kettering, and have virtual next week with Mayo
For now I’m continuing with Jemperli (immunotherapy)

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@angierivas1

Hello. Based on my experience with my mom's endometrial cancer, I learned that once radiation is administered, it cannot be offered again as a treatment if the cancer recurs. When I was diagnosed last year with low-grade endometrial cancer, my oncological surgeon advised against radiation. He clearly explained that it would not make a difference and could do more harm than good.

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Hi, Thank you for that information. I appreciate it.

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@riverland889

I’m in same situation recurrence in vaginal cuff 2 yrs after hysterectomy followed with external radiation and 5 intense brachytherapy I thought there couldn’t possibly be anything left but two months ago I had a positive signatera test so now I am on Jemperli immunotherapy drug
But this stubborn thing although microscopic keeps lighting up on PET scan
Pelvic exam totally normal. we are hoping the Jemperli is working but how long can I stay on it? I’ve set up second and third opinion appts

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What is a positive signatera test? I haven't heard of it. Thanks. Hope the new treatment works great for you. 🙏

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@idaho1960

Hi There,

Thank you and yes I do have everything in order to ask the surgeon. Some questions will not pertain until after surgery and the staging comes in. I have researched about every report done, test, research group etc. on this cancer on the internet (hours and hours over the last 3 weeks) that I have been able to find and access all the way back to the 1970's. Speaking of which seems the overall survival rate has not really increased much if at all in that time period. Which I think is odd considering radiation for treatment was not even thought of back then. In addition hasn't there been new chemo drugs and also immunotherapy? One would think survival rates would have increased. Plus research from the 70's a couple research groups reported 1,3,5, 15 and even 20 year survival rates. You really do not see any current day or even last 10 yr research groups looking into more than a 5 yr survival stat. Wonder why that is.

I will ask about getting brachytherapy right after surgery if it is conductive of a better outcome in recurrence or not. I have read both reportings from various different research facilities and none really seem to have a steady overall conclusive answer one way or the other. I would say 50% say yes it does help right after surgery and 50% say it didn't matter to have it. With data like that it really does not help one way or the other.

I would think "personally" that it may be beneficial to have done right after surgery even if they have you listed as low risk for recurrence. I will though for sure talk it over with my Oncology surgeon.

Question: Did they mention to you that this may be your only recurrence or now since you had this one are you susceptible to having another?

Did they change your staging from intal once you had your recurrence to cuff?

Thanks so much.

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Hello. Based on my experience with my mom's endometrial cancer, I learned that once radiation is administered, it cannot be offered again as a treatment if the cancer recurs. When I was diagnosed last year with low-grade endometrial cancer, my oncological surgeon advised against radiation. He clearly explained that it would not make a difference and could do more harm than good.

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