Endometrial stromal sarcoma (ESS): What treatment did you get?

Merry Christmas!

I found out last night that my sister has a “reoccurrence of endometrial cancer”. I’m seem to be more worried than she is! We will find out today the treatment plan. I live about 7 hours away from her and came down yesterday to surprise her. I need to go back home tomorrow ( I work still) I’m afraid to leave her.
Is this treatable? Is the treatment successful? She had a hysterectomy in Feb? I need encouragement and hope. Mostly Jesus!

What kind of treatments did she receive following her hysterectomy?

@ceciliabedogne4 I’m a cancer survivor (endometrioid adenocarcinoma) and I think a diagnosis is very hard on loved ones. My brother was diagnosed with prostate cancer one year after my diagnosis and he was very frightened. We live across the country from one another and all I wanted to do was take away his cancer and his emotional pain. Fortunately, his daughter lives near him and there are supportive relatives nearby.

I was very pragmatic after my initial diagnosis and going into surgery (I had a hysterectomy). I had a recurrence two years later and was very frightened. Then once I had a treatment plan (radiation therapy) I felt I could handle it all on my own. My brother was my biggest support and I feel there is nothing like the love between two siblings.

Without more information about your sister’s initial diagnosis - was it endometrial stromal sarcoma - I don’t know what the treatment would be. This is something her cancer care team will advise. Here is something I do know about. Hope. I saw Hope posted in the Radiation Oncology clinic where I received the radiation therapy and it was a little lost on me until I realized in fact I did not helpless or hopeless. I had and still have a wonderful cancer care team and I do have Hope.

Once you find out more information from your sister about the treatment plan will you please let me know?

Cecilia, what did your sister learn about treatment options? How are you doing?

Hi All,
I have just been diagnosed with a high grade of ESS. I had a hysterectomy (not at Mayo). The pathology report took 4+ weeks to get back. I still haven't seen the pathology report but my doctor (not from Mayo) told me that this is the diagnosis. The doctor didn't know how to treat it. He was going to meet with a group of doctors to discuss a treatment plan which is why I decided to go to Mayo. They will do their own pathology report. Anyway, it's a scary diagnosis. I just joined this board to see what everyone's experience has been with this disease that is so very rare. I am encouraged after reading some of these comments that Mayo is the right place to be for treatment.

@swagner2024 I can understand why you are so frightened about this diagnosis. I can also understand why you decided you wanted to go to a place that is specialized in these rarer cancers.

Four+ weeks is a very long time to wait for a pathology report. I know that sometimes pathologists will send the slides out to a pathologist with expertise in the particular area before reporting the results but I would think the surgeon or doctor would be informed of that.

It's really good that you decided on Mayo. I was seen at Mayo Clinic for endometrial cancer (endometrioid adenocarcinoma, FIGO Grade 1) and then had a hysterectomy there. All of my follow-up has been at Mayo which is a long day's drive for us but it's totally worth it. The care and attention is outstanding.

Your local pathologist will send your biopsy/slides to Mayo and their pathology department will generate their own diagnosis and report just as you said. Do you have an appointment scheduled yet at Mayo? Have you tried logging in to the Mayo patient portal to see what might already be scheduled for you?

@naturegirl5
Thanks so much for your response.
I am in limbo right now. I do have the app and have logged into the portal and there is nothing scheduled right now. I am assuming the testing is going on right now.
I live in Illinois and it is about 6 hour trip to get up there. It's good to know that it's worth the trip. I hope you are doing ok now....
Warm Regards, Sandy

@swagner2024 Your present diagnosis is frightening enough without worrying whether there is a local team that has the expertise to take care of you. Our trip from Michigan is 7.5 hours of driving time (that's not counting the inevitable stops for the bathroom, fuel, and food). After 4.5 years of these trips I must admit it gets tiring to contemplate another trip within 3-4 months. But we do it because the care at Mayo Clinic has been so excellent. I remember thinking on the way to Mayo Clinic for to my surgery for my hysterectomy that I felt very grateful to be able to go to Mayo Clinic and have the means to do so.

Thank you for the good wishes. I am doing OK. Will you please let me know when your appointment is scheduled? I'll check back in with you.

@swagner2024 — my heart goes out to you. I am acutely aware of the feelings of fear and overwhelm as I also have high grade ESS, diagnosed late last fall. Though we knew after my hysterectomy that the tumor was sarcoma, the final pathology report took 4+ weeks for me also. What a long time to wait! In my case (Stage 1b) the protocol is no chemo or radiation and I am now in surveillance with a CT scan every three months.

I am glad to hear you are going to the Mayo. One of the best things I did after my diagnosis was have a consult with a gynecological oncologist familiar with uterine sarcomas. This person answered many questions and filled in gaps in my knowledge. It’s so hard to find good information with such a rare cancer!

My thoughts are with you. Please update us when you know more if you feel comfortable doing so.