Relapse endometrial cancer

@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?

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

Thank you.. yeah I did realize after I stated about radiation therapy that is was indeed used earlier then the 70's. I was mistaken on my previous findings.

I'm headed Monday to meet my Oncology Surgeon for the first appointment to go over surgery options. I am hoping for Stage 1A Grade 1.. As of now I just want this taken out of me as soon as possible and will then take it day by day as to what happens next.

Thank you everyone.. I will update as things go along.

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 asked the radiation oncologist about recurrence and survival rates during my first appointment with him. He said that with this recurrence my survival rate was about 85% over 5 years. That was in contrast to what my surgeon told me at the initial diagnosis when the survival rate was explained as 95% over 5 years.

After the recurrence and the radiation therapy my Survivorship Treatment Plan was "reset". Had I not had the recurrence it would be 5 years since my first diagnosis in 2019 and I would no longer be under active surveillance. But with the recurrence in late 2021 my clock as reset to 5 years. In early 2022 after I finished radiation my active surveillance schedule for check-ups was every 4 months with physical exam and CT. I did that for 2 years, as recommended by the radiation oncologist. Since no evidence of disease has showed up during that time I am now seen every 6 months with a CT on an annual basis.

Both my original surgeon and the radiation oncologist told me that I am at risk for other primary cancers including lungs, and colorectal, breast and kidneys. That was written in my Survivorship Plan that I received after my hysterectomy in 2019.

My staging was not changed in my records after the recurrence to the vaginal cuff.

With everything you have included in your posts here I will say that you are far more prepared for your initial appointment with the oncologist then I was in 2019. I was so frightened about the initial diagnosis that I didn't even think about the chance of recurrence and where recurrence might occur.

In many respects how cancer is diagnosed and staged will come down to how the tissue is prepared in the lab and the pathologist who examines the gross specimen and the slides. You can ask your oncologist about that and especially whether they talk directly with pathology after surgery.

I share with @gynosaur42 in offering a hug and best wishes.

I haven’t read @naturegirl5, Helen’s, response yet, (and think of that as the cavalry showing up) but want to say that you really seem to have your head on straight around all of this, @idaho1960. You’ve done excellent research at a time when my head was just spinning and you’re asking great questions. I hope your outcomes reflect your readiness to take this on.

Now I’ll set this aside and come back later when I can listen to and take in Helen’s response.

With a hug and best wishes,

Gynosaur

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.

@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?

Hello,

I'm newly diagnosed.. Endometrioid Grade 1 (Just via biopsy thus far). Vaginal ultrasound early November mentioned no Myometirum mass seen. Of course all this may change after surgery and pathology comes back with stage.

Meeting with Oncology Surgeon Monday for my first meeting to go over things and to schedule Hysterectomy.. hopefully in a couple weeks.

I'm keeping positive thoughts that after surgery (when I get the actual stageing will be Stage 1a Grade 1.

I'm trying to be pro-active as much as I can. I have noticed that even the lowest type, grade and stage seems to have quite a bit of recurrences. I'm not sure how well I believe the stats online for survival and recurrence rate.. as they seem pretty low for recurrence but I see so many posts in various forums and support groups where it may not be so infrequent.

Anyrate.. It it pretty common to for vaginal Cuff recurrence to be the most frequent recurrence with low grade low stage?

A lot of the times when low grade/type and stage from what I have noticed they do the surgery and say "we got it all" and then send you on your way without any additional treatments. And then your monitored every 3 months for a few years or more seems.

Question I have do you think Vaginal cuff brachytherapy right after surgery would help lesson the chance of recurrence in the vaginal cuff or NO? I read mixed reports after testing being done for stats if it helps or not online from all different research places. Some say yes and some say it doesn't seem to matter one way or another. What's your thoughts as actual patients that have or are still going through this.

Also if recurrence does happen in Vaginal cuff and nowhere else ... can that be easily treated or does it keep coming back and back over and over or does it eventually stop recurring? Trust me I would rather have a recurrence happen there if it was going to happen instead of a distance organ somewhere else in my body. I know recurrence can happen anywhere but stats do say Vaginal cuff is the most common.

Thank you.

Amazing.I was interested in what Helen said that made more sense to me. It’s insane that in order to find out what’s wrong with us we have to go on Mayo connect. Surely I can’t be the only drs patient that has this after all isn’t that what they are supposed to specialize in? I have major trust issues with doctors having missed my cancer twice. Most of my doctors are aware of this I think that’s why I always get the tests I ask for. Thanks. I am going to try the internal obdurator exercises I found some beginners ones. I’ll let you know how the Bowen pt works also.