Relapse endometrial cancer

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.

I just looked at the treatment guidelines, and they say for stage 1A and grade 1 or 2 that "observation preferred" or "consider vaginal brachytherapy if lymphovascular space invasion (LVSI) and/or age >60".

Treatment guidelines are intended to standardized treatment across the country and provide the best outcomes for the most patients, given current knowledge. They keep the possibility of over-treatment in mind, both to prevent patients from having side effects from unnecessary treatments and to manage the unavoidable conflict of interest in our current medical system that doctors and hospitals make more money with more treatment. How many people should receive unnecessary treatment to prevent one recurrence?

I definitely understand your desire to do everything possible, but in my view observation could be your best course of action in that situation. Vaginal brachytherapy isn't horrible, but it does cause some issues. Also, I have read a lot of this literature, and my impression is that low grade recurrences in the vaginal cuff are frequently cured on the first recurrence and do not keep coming back. But that's a good question for your doctor.

Post-hysterectomy radiation therapy for endometrial cancer has been at least common (and possibly universal) since the 30's or 40's. My great-aunt had radiation therapy after her hysterectomy in 1942 or 43, probably at the U of Minn. She was a farm girl (she had cancer when she was 27) from western WI, so not privileged. This was external radiation; VB was developed much more recently. My impression was that it is only more recently that they stopped doing external pelvic/abdominal radiation on everybody, either because they realized which patients needed no treatment or because there were other options like VB and chemo.

@idaho1960. I just posted a message to you on another discussion and asked how we can can support you. I also asked about your diagnosis which you have kindly expanded upon here. It sounds like your treatment plans are moving quickly and that's good.

You raise some very good questions. My diagnosis was adenocarcinoma, endometroid type FIGO Grade 1. Same as you. I did have a recurrence that was found in the vaginal cuff. It was two years and a few months after the radical hysterectomy. I had a PET/MR scan after the recurrence was found in the vaginal cuff and those scans showed no evidence of disease.

My surgeon told me after the hysterectomy that I would return every 6 months for physical pelvic exams but no CT scans. She said that the majority of recurrences are found on the vaginal cuff. It was during one of those exams that the recurrence was found on the vaginal cuff. After many discussions (I had external pelvic radiation and 2 treatments of brachytherapy) I figured that maybe something was "missed" in pathology in the cervix. After all, pathology takes a sampling of tissue and cannot examine every single piece of tissue that is removed. Maybe there needs to be a change in protocol where more of the cervix is examined? And what would have happened had I had the radiation therapy after I was healed from the hysterectomy? I was staged 1a after the hysterectomy which means no other treatment was recommended at that time.

So you do raise some really good questions. Would you like to write these questions down and ask your oncology surgeon? And then come back here and let me know what your surgeon says?

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

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.

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

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.

@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?

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