u/Complete-Skill-5944

I was diagnosed with Stage 3, Grade 3 EC in March. I had a full hysterectomy and one of the 12 lymph nodes tested positive. I completed my six rounds of chemo w/ Dostarlimab, and just had my first Dostarlomab alone treatment this week. Standard of care is Surgery+Chemo+EBRT(25-28 days)+VBRT (2-3). My PT scan was clear, my CA 125 has been normal, my Signatera score (only 1 taken) is 0. The next one is before my next Dostarlimab treatment in November.

I met with the Radiation Oncologist today. After a lot of research, I was leaning toward vaginal brachytherapy (VBRT), but not external beam (EBRT). I told the doctor that at the start. After a long discussion, and to my surprise, the doctor said her intention was to do daily external beam targeting the area around the vaginal cuff and the lymph canal, but to NOT to the vaginal. Needless to say, I was shocked. On one hand, I was happy. I’m late 60s with a history of vaginal atrophy; however, I can’t use estradiol cream anymore. However, I am concerned about the increased side effects that come with external beam. The treatment, if I understood it correctly is, 40 Gy fractioned to 25-28 sessions. She said it was a microdose. The doctor said that since I tolerated chemo well, I would likely tolerate this as well.

One area of research indicated that the EBRT with the Dostarlimab could potentially lead to lymphedema due to the extra systemic pressure on the lymph nodes.

I don’t know if anyone out there can relate to this, but I am seeking thoughts. I was mapped today (just in case), but I am to call the doctor’s office Monday to tell my final decision on how to proceed. FYI - the doctor is the head of the Radiation Oncology department at the cancer center at which I am being treated. So far, I have followed all procedures and had a positive experience. For some reason, radiation is freaking me out, and it feels like it’s the first time I had to make a decision about my treatment.

Any advice? Feedback?

Thanks in advance.

So, I am halfway through my chemo therapy schedule (completed 3 of the 6). I was delayed a week because of low blood counts. However, when getting that blood work done, I also received a 9 week follow-up of my CA125 results. When I got my first CA125 results (soon after my diagnosis - Stage 3, Grade IIIci) - my number was 101. Normal is 0-38. My results halfway through are now 19. When I saw that number I was so happy I cried in the car coming home. I had read that they are looking for at least a 50% reduction by this point to show that the chemo is working. I hope I'm not jumping the gun in being so happy. I authorized getting the Signatera testing. Today was the first draw for it. I know that the only thing I can hope for is no recurrence, or at least catching it early to find a way to treat it quickly, but it felt so good to get some GOOD news today that I just had to share it with everyone here. Happy Friday!! Stay positive!!!

Hi, Everyone. I've been reading posts to this reddit for a couple months, and I just decided to join. You've all given me such insights; thank you for sharing your fears, hopes, experiences.

What drove me to join is to commiserate a bit.

About me: I was diagnosed the end of March this year with EC indicating serous cell in the initial biopsy. My gyno was entirely upfront with me about what as to come, and suggested a couple of gynecology oncologists near me. I selected one, and his office contacted me the following morning before 8:30AM to schedule an appointment later that morning. This was a Thursday. They recommended a radical hysterectomy for Monday, which I would have done if I could have scheduled all my pre-med tests in time. So, it was done the following Monday - April 6th. The histography indicated Stage 3, Grade iiiC1. I started my chemotherapy May 18th.

I authorized molecular and genomic testing. I was never told the outcome, but about a week and a half ago, I requested copies of them. I just plugged into an Ai program some key outcomes from my molecular and genomic testing. It took me back to those days in April recovering from my surgery and researching the information on the pathology report until 4:00 am, watching videos, and feeling my life slipping away from me. One. Bad. Thing. After. Another.

I love my team, especially my Gynecology Oncologist - who is head of the Cancer Institute where I am being treated. All the nurses in the infusion center are amazing. I've overcome my anxieties and am enjoying the good days, which are more frequent than I thought they'd be. However, I keep seeing - to quote Seinfeld - "prognosis negative" or, rather, "poor" on all the indicators: Not MSI-H, TP53, BRCA2 alteration. The treatment I am getting is spot on for the diagnosis. I just realized that I need a support group and not just a message board.

Thanks for reading.