Radiation or not after surgery for endometrial cancer?

I was diagnosed 12/21 and had a complete hysterectomy 1/22. Lymph nodes were clear and was told 'they got it all'. It was stage 1a and I was told 'standard care' no chemo or radiation needed because the infiltration into the myometrium was only 36% and anything under 50% did not need adjuvant treatment. (I later learned that this had just changed from 33% shortly before my diagnosis, so if I had been diagnosed a bit earlier, the recommendation would have been to have adjuvant treatment.) Heck, 95% of women go on with no recurrence and I should consider myself luck to be in such a great state. Just come back every 3 months for an internal exam (turned out to be very brief exams). I happily bought the cool-aid even though in the back of my mind I thought there should have been some sort of follow up. At least a scan or something. But I followed Drs orders and didn't question anything. In May 2023 (1-1/2 hrs. later) I had my 3-month check up. She felt and saw nothing, so I was given my clear bill of health. June 2023 I started bleeding. I set up an appointment immediately, and was greeted with "it's probably because of rough sex, I just saw you a couple weeks ago". But when she examined me her face changed and told me a different story. She said 'good thing my exam irritated the vaginal cuff and the tumor broke through'. Good thing? I had a tumor growing behind the cuff that she couldn't feel, but might have been caught with a scan. By the time it had done enough damage to bleed through the cuff, it has also advanced into my lymph nodes. I very much wish I had advocated for 6 month scans at the minimum, if not for follow up radiation.

My advice is listen to what your doctors say, get 2nd opinions, and above all listen to what your body is telling you. Learn to advocate. Learn to speak up.

@karina60 This is all so very encouraging. Thank you for sharing your chemo/immunotherapy.

Spending the weekend by yourself and in pain is likely familiar to many of the cancer survivors here. I'm with you. I like people to check in with me. I wonder if your friends and family realized how much you would like that contact? Sure, people have their own busy lives to lead but a little reminder at times can prompt those phone calls or visits. It can be difficult to ask.

It's so good that you are doing well with your treatment protocol even with the chemotherapy pain and neuropathy. One of my friends had chemo/immunotherapy last year for colorectal cancer. She had a lot of neuropathy in her lower legs and feet. During a routine visit to her orthopedic surgeon for a hip replacement she'd had a few years ago they talked about the neuropathy. Her doctor suggested physical therapy (PT) which she had not considered and none of her cancer care team had suggested. She did the PT and found it to be encouraging to get her moving and helpful. Anyway, just a thought.

September 5 and 8 are coming up soon. Will you come back and let me know what you find out with your CT scan?

Yes. That’s the cancer I was diagnosed with. Wishing you all the best in health.

I was diagnosed with endometrioid adenocarcinoma of the uterus, stage 1. I was told this is a slow moving cancer. The cancer would have been missed if a second biopsy/ or larger piece of uterus lining wasn't tested. The first biopsy during a hysteroscopy / D &C procedure showed no signs of cancer. It just showed up a polyp on the lining of my uterus. The polyp was removed and no cancer was found. I think a lot of my bleeding was because of the polyp. My question is, is this the kind of cancer you were diagnosed with..
Good luck to you!

@naturegirl5 thank you for connecting with me! I copied my chemo/immunotherapy below. My cycle is every 21 days I’ve just completed 3 of 6 infusions. Next is Sept 8. I have my 1st CT scan on Sept 5 to check progress. I’m doing very well so far. My main side effect is pain that is present in the days after my infusion. The pain starts to go away about 6-8 days after infusion. I’ve had no tummy /bathroom issues. Grateful for that but the chemo pain is no joke. Neuropathy is also present. I’m staying positive but this weekend was tough. I didn’t hear from anyone all weekend. I felt so alone with my cancer but, people have lives to lead and I understand that. It was just strange for it to be quiet after many months of people constantly checking on me. I bet a lot of these feelings are familiar to the survivors on this forum : )

Regimen: BILH OP Dostarlimab-gxly / PACLitaxel / CARBOplatin

@karina60 Thank you for sharing your journey. You wrote what many of us have shared again and again. Be that squeaky wheel. Advocate for yourself. You are the expert with your own body. If you feel something is not quite right with your own body then push for answers. Any one of us who has had a cancer diagnosis in the past knows that we are at risk for a recurrence or another cancer. Here is to the wish and hope that you are looking at many more years of life ahead due to your own advocacy.

Would you like to share the kind of chemotherapy you are receiving? How are you feeling?

Happy to have found this forum. In Nov
2020 my diagnosis was stage 1 endometrial cancer; complete hysterectomy, lymph nodes clear. Five sessions of brachy. Told I have excellent prognosis. Forward 4 years to Dec 2024. Pain in lower right pelvic area. PCP ordered X-ray & was told I was constipated. I disagreed and pushed for days for a CT scan given my history. CT scan showed a large tumor. Recurrence of endometrial cancer. This time it traveled to my
Upper left lung 4 nodules. Metastatic stage 4. I’m half way through chemo have 3 more rounds. Fighting for my life. Advocate for yourself. If I did not push for the CT scan, I would be looking at end of life by December. At least now, I have a chance!

I also had only 2 Brachy treatments after my full round of external radiation. I never asked why not 3, but I remember being relieved about it.

Hi. Had hysterectomy December 2022. Chemo and all radiation completed in august 2023

Not to alarm anyone, but awhile back, in a thread, I was reading posts from few years ago, lady stage 1 is how it started. She was given hysterectomy only, not follow up therapy or treatments since doctor said low risk. I've read that A LOT w/stage 1 endometrial cancer it seems. Well, her follow up scan showed all clear, but she was having some ongoing issues of some type, so she pressed further with doctor. They did some kind of very specific MRI scan, found cancer in bone or breast, can't remember right now, but it had spread and reg scan they do at follow up screenings, as reg maintenance, didn't find it. Anyways, there were some posts in between, back and forth, but then she came back, said had spread to her brain in just less then year past that. She was very VERY Upset, that her original doctor has not advised treatment, since she was only stage 1. Did only hysterectomy, no follow up. People had been going back on her thread to check on her later, no response. I only tell this, because it was very upsetting, and I'm stage 3, pole mutated. So, it told me to be very vigilant and proactive in my own care. I was thinking before reading all that thread, "I wish I were only stage 1, needing hysterectomy only...,"as me and Dr talked about. That they sometimes don't do any other treatments if stage 1. Well, after reading that, I realized, at no matter what stage of cancer, definitely do your reseach, and be proactive, seek answers as you are, because "caught early" is very good, but not a guarantee its not to be taken seriously. Prayers for wisdom, complete healing for you.