Relapse endometrial cancer

I had external radiation and brachytherapy. I have terrible sharp abdominal pain in my groin that radiates to my back, feels like toothache. Oncologist did mri, Ct and pet scan all came back normal. Dr said to go to PT and have been seeing chiropractor it helps for a day and starts again.
No one seems to know what it is and I think that drs think that because I had scans that should be good. Does anyone else have these kind of pains. Maybe it’s scar tissue or it’s from the radiation .
No one ever answers those questions.

Unbelievable! Thank you!

@jeanadair123 Is it possible that the pain is soft tissue (muscles)? Depending on what I’m doing I get groin pain that is sharp too. I went to a pelvic floor physical therapist who helped me figure out this was the internal obdurator muscle that was affected by having a hysterectomy and total left hip replacement within 3 months of each procedure. The pain has never really gone away however I now recognize the source and I have exercises to do for it.

Sure, it could be scar tissue too. What other explanations did the oncologist come up with since your scans were all negative (thank goodness!)?

Thank you for the info I shall look that up. I go to a chiropractor no cracking of bones he uses what a call a clicker and pressure. I am also seeing a physical therapist we are going to try the Bowen procedure. Actually my gyno oncologist never mentioned that it could be anything else, I think she is probably tired of me calling and just gives me the tests to put my mind at rest. I asked her about PMC pelvic radiation disease in an email and really didn’t get a response. The pain is so sharp it takes my breath away. I really appreciate your help and info. Thanks so much to you and Mayo connect.

Hello! I was diagnosed with endometrial cancer 1B stage two. I had a complete hysterectomy July of 2022, followed by bracytherapy. In March of this year I began having those exact symptoms. So far no answer either. It’s been going on for 7 months. I will keep you posted if I find out anything! Hope you are feeling better!

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.

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.

@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?

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 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