Robotic hysterectomy 2years ago, only change in cells.

@helenteitzel Welcome to Mayo Clinic Connect. We aren’t medical professionals and we provide emotional support and helpful advice to one another. I will try to do that for you and hope that I can be of some help.

After the hysterectomy to then be diagnosed with cancer again is so disheartening. It’s so awful that your questions haven’t been answered by your providers. I know this only too well as I had a recurrence 15 months after my hysterectomy. I have a few questions for you that I hope will help. I’m going to provide my detail to provide you a kind of template for the information I’m asking from you. It’s totally up to you what information you’d like to provide or not provide.

1. What was your diagnosis that resulted in the robotic hysterectomy? My initial diagnosis was endometrioid adenocarcinoma, FIGO 1, Stage 1a. My hysterectomy was also robotic, laparoscopic and the uterus, ovaries, fallopian tubes and cervix were all removed. After the hysterectomy no other treatment was recommended given the FIGO grade and stage.

2. What was the schedule for your follow-up appointments that are referred to as cancer surveillance after your hysterectomy? My cancer surveillance was every 6 months after the hysterectomy. My follow-up appointments were pelvic exams. I was concerned that no scans would be done but my surgeon told me that if the cancer recurred it would most likely happen at the vaginal vault and would be caught on a physical exam. That is what happened for me. My nurse practitioner found a little polyp like thing on the vaginal vault, removed it and sent it for biopsy. Pathology read the biopsy and it was a recurrence of the same cancer - endometrioid adenocarcinoma. The treatment was external radiation and vaginal brachytherapy at the site of the recurrence.

3. Did you detect the smell? I wasn’t sure who detected the smell from your initial post. In the year since the vaginal cancer was found how often do you return for cancer surveillance follow-ups? Did you have a pelvic exam and CT or MRI scan each time you returned?

6. Here is what I’m wondering. When the vaginal cancer was found and a biopsy sent to pathology, was the diagnosis the same or different than the diagnosis you received the year before when you had the robotic hysterectomy? Or is the vaginal cancer a different cancer altogether?

I will add one more item from my recurrence. My partner (a pathologist) questioned my recurrence diagnosis. He talked with my nurse practitioner who then put us in touch with the pathologist who read my specimen. I’m including this only because it is possible to ask your surgeon or your doctor to talk with the pathologist who examined your specimens and ask to review the specimen again.

Sorry for all the questions. I hope that we (me and others here in our Support Group that will respond) can help you figure this out.

So sorry to hear. Prayers for you. Thanjs for your input.

Hello
Replying here to contribute to original post.
My recurring and secondary treatment mirrors, Helens.
My follow up (4 months post surgery) pelvic to the original surgery nothing was found at that time.
In December I had two days of breakthrough bleeding . Unfortunately I contracted Covid ( despite all vacations and boosters) which prevented my return until January for an exam and biopsy. That biopsy confirms the vaginal cuff return of the endometrial cancer. I was additionally given contrast CT, enhance MRI and PET scans which confirmed the location and size of the recurrent tumor. Follow up external radiation, and interstitial brachytherapy has just been completed (May 26 of this year). My review of the biopsies indicated a DMMR (missing repair protein) with , microsatellite instability high cellular conditions for the initial tumor, which indicates the likelihood of a reoccurrence. Even given that particular biopsy, there was no additional treatment scheduled after the initial surgery.
There is a suggestion and most recent literature of desirability of secondary treatment in the case of missing repair, proteins and high microsatellite instability.