Radiation or not after surgery for endometrial cancer?

As you can probably see from my previous posts, I declined my oncology surgeon's recommendation after hysterectomy of chemo-radiation (25 weeks I think). I was Grade 1 Stage 2 (invasion into cervix of under 10%). I did do an experimental Brachy therapy of two high dose treatments at MD Anderson. I did not reject the original recommendation lightly. I had two second opinions from geographically diverse centers, and I also saw the local radiologist that the surgeon recommended. None agreed with the chemo recommendation, but all but one recommended some form of radiation -- ranging from full external beam to localized internal. One other option was to "wait and see." When I went with the 2 Brachys, I felt that I had done enough to research my options and am okay with this decision no matter the outcome years from now. If you can, try to get other opinions. It's not hard to do it virtually.
I am having constant pain in my right hip radiating down my leg to the outside of my knee. This occurred after the hysterectomy but before the Brachy, and it got worse before it now is starting to get better with PT. Everyone wants to blame the Brachy, but it was definitely trauma to my L4-L5 and S2 from the surgery. If not for this, I would say that the Brachy was the simplest procedure option that was out there. It was not painful for me at all, but you do have to dialate your vaginal area a few times a week to prevent stenosis.

I'm in the exact same position as you. I was diagnosed with serous endometrial intraepithelial carsinoma, stage 1 two months ago. I decided to use the "wait and see" aproach after my hysterectomy, with no chemo. My oncologist is okay with this but my primary care physician wants me to get a second opinion and reconsider. What scares me is a post I read here just this morning. Another member went from stage 1 to stage 4, and is now considering "death with dignity". I was shocked and just sent a few questions to her for my own edification. I'm so confused.

I am so sorry for all that you are going through. Have you considered a second opinion?
Palliative care for comfort, whether you proceed with treatment or not?
Sending hugs.

@again2 This is difficult and the decision you make is really up to you. So many people and especially family members want their loved one to keep in treatment but ultimately it's up to the individual.

One of my friends had carboplatin chemotherapy for a different kind of cancer (Stage IV Colorectal). She had neuropathy, joint, and muscle pain. Her chemotherapy was in 2023 and early 2024. She went to physical therapy and said it was really helpful. She is not longer in pain however the carbo affected her feet so much that she feels "clumsy" when she walks but is no longer in pain.

You are the best judge for yourself. You could get another opinion, ask if there is a clinical trial you could enter or you can decide no more treatment. Is there a social worker in the oncology unit you can talk with? You could ask your oncologist or someone else on that unit for a referral to a social worker. You'd want someone whose specialty is oncology.

There is a neuropathy support group here on Mayo Clinic Connect. Would you like to post there for feedback?

Mayo Clinic Connect: Neuropathy Support Group.

-- https://connect.mayoclinic.org/group/neuropathy/

Yes I did have 25 rounds of radiation with my inital treatment. I have stage 3 endometrial cancer. Initially radiation and 6 rounds of chemo. Cancer was gone and no further follow up done. Just a physical and proclaimed goode.Dumb me. I never thought to research and learn that I should have been checked.Only after I asked why no scans, was there one ordered and the cancer had returned.
More chemo, carbo and platin with keytruda, didn't work. 12 rounds of Doxil.Worked well, growths pretty tiny and kept at bay until the doctor suggested taking a 3 month break followed by pet scan last week and growths had multiplied. Big mistake. Now scheduled for echo, followed by 3 rounds of enhurtu and petscan.
I think I should quit now inasmuch as I am in pain most of the time,day & night with neuropathy,joint and muscle pain. The neuropathy in my feet won't stop.I feel like my feet are curling up which of course they're not. Back,knees,etc. too much pain. No meds to help.

@again2 Hello, I looked back through your previous posts. I thought you'd had prior radiation therapy, is that correct? Can you offer more information about your diagnosis and what treatments you have already had? That will help our members to provide you with feedback. Also, what did you oncologist recommend?

I just came across this again and so glad I did. Cancer cells have grown. Suppose to start new treatment but not sure I'm going to go through it. Doc didn't say so verbally but in his summary of the visit, I think he is saying it's pretty much a waste of time.
If anybody reading this has thoughts on what to do,please help me. Thanks.

Good morning! I also just completed 25 external beam radiation treatments. I enjoyed whatever music was on, but also used visualization techniques. For example, I love to cycle, and so visualized going on my favourite ride on Vancouver Island. On a few occasions when my bladder was too full and I thought I might not make it, I did a counting backwards technique in my head where I would think a number and then its reversal, e.g. 100-1, 99-99, 98-89, 97-79, etc. I found distracting your mind to be very effective, although the noise did not bother me. Best wishes!

i also pray the Hail Mary and I throw in some Our Father it really does make a difference. i've always found great comfort with the Lord thru difficult times.

i also add personal prayers and always ask God to send the healing powers of the Holy Spirit to everyone on these forums.

Thank you for your reply. I asked them to turn down the music, talk to me through the microphone, and am using foam ear plugs. Much better. I also pray Hail Mary’s - 30 = the session time. The repeating of the same words is relaxing.