Radiation or not after surgery for endometrial cancer?

My family member had some issues with diarrhea after the third week and some mild pain in the area for a few weeks after the treatment was completed but nothing after that. Still in remission and doing very well three years later. But she had an expert team at MD Anderson who monitored her carefully, ensured that her bladder was full before every session and recalculated everything midway through the treatment as she was responding so well to the treatment plan. Radiation therapy is an exact science and a fine art. They have a saying there: “where you go first matters” as they often have patients who have had less than optimal care elsewhere and now have a reoccurrence. Do your research and go to the best facility in your region. It is worth choosing carefully.

I am new to the effect of my endometrial cancer. I had one round of chemotherapy, which made me very sick and dehydrated. I currently am on Hospice care b/c of events which occurred when I went to a rehab/nursing home after the chemotherapy. I am looking for support and knowledge about should I be on Hospice care or still seeing my oncologist.

Why are you on Hodpice?
What insurance do you have?

Back in 8/22 had hysterectomy for endometrial adenocarcinoma, no fallopian tube, no ovary, or tube involvement. However, there were 2 tears on back of uterus for some reason, so was told needed to have chemo, 2 runs of chemo 3 weeks apart between 5 weeks of external radiation, and 2 brachytherapy because adenocarcinoma cells were found in peritoneum wash. Was originally told would only need 3 brachytherapy. I recommend the brachytherapy so you should not have any problems in the future. Have read many times if you do nothing 2 years later there are issues on the vaginal cuff. I wish the brachy was all I was requested to have needed.

@blancheruth This is so distressing that you needed care at a rehab/nursing home after one round of chemotherapy. I did not have chemotherapy when I was diagnosed with endometrial cancer (endometrial adenocarcinoma) in 2019 and had a recurrence in 2021. I did have radiation therapy, both external (pelvic) and internal (brachytherapy) which I realize now is so much easier on the body then chemotherapy.

My understanding is that everyone reacts a little different to chemotherapy infusions. It's difficult to share information without knowing more about why you are on hospice. Are you still at the rehab/nursing home? Did you talk with your oncologist about other options? What did your oncologist recommend and suggest?

I was diagnosed with endometrial cancer, grade 3, June 2023. I underwent a total hysterectomy that was followed by 6 chemo treatments and then 4 brachytherapy treatments. My gynecologist oncologist felt strongly that I should have the brachytherapy and after much thinking, I decided that if I didn't follow her advice and the cancer came back I would always wonder if having the radiation could have prevented a recurrence.
The only side effect from brachytherapy was tiredness. The one thing that I was not expecting was having to use a dilator "for the rest of my life". If this is not done, scar tissue would create a problem for being able to have follow up gynecological exams. It has now been a year since I finished the entire treatment protocol, my CA125 went from 259 to 10 and I keep my fingers crossed that all is well.

Excellent decision. My family member did not have radiation the first time around and had a reoccurrence at the 5 year mark. She had general radiation and several MRI guided linac treatments plus low dose chemotherapy the second time around and has been fine for 3 years so far.
Her follow up now includes an annual PET scan to ensure anything emerging can be caught early and treated promptly. So far so good!

After my latest recurrence of endometrial cancer, my GynOnc set me up for Brachy radiation. My recurrence happened in Feb. It's been 20 weeks now and I still haven't started because when I was supposed to start, after having done the simulation, it turns out that the device wasn't in far enough because of atrophy. They sent me home to use dilators for 2 weeks. I came back and the simulation was successful, and I was scheduled to start this past Tuesday, (6/25). I get there, signed in, and was listening to voicemail as I waited, and had a voicemail from them telling me they were pushing treatment back another week!! She said the treatment wasn't ready yet and the doctor didn't feel comfortable rushing it. Mind you, it's been 20 weeks! I saw that the most someone should wait for treatment is 62 days. I'm wondering if I should just forget about doing the radiation. I'm really worried about the risks to my bladder and bowels. This is my 2nd recurrence. All together I've had a hysterectomy, chemo 2x, and 20 external radiation treatments. I've also been through 3 other GynOncs. I feel like I have zero advocates. Any opinions?

Thank you for sharing your story. It makes no sense to me that you would have had your radiation moved because “the doc didn’t feel comfortable rushing it”. Yet you have been left waiting for 20 weeks. If you have a new date in a week’s time I would suggest going through the process. You are unlikely to be able to get treatment elsewhere any sooner. However, if there are further delays, find another clinic that can treat you right away. Keep fingers crossed that this was just a hiccup in the process. All the best!

I kinda answered my own question, and have decided to change doctors. I found out where my former doctor practices and he's taking new patients. (He left the practice I was previously going to) He was awesome. I know it will further delay treatment, but I really didn't want radiation of any type again. I felt like I was steamrolled into doing it. The RadOnc doctor was okay-ish but I really didn't gel with my GynOnc. Thanks for answering! 😉