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!

I wasn't given an option for radiation because the endometrial tumor is very close to the colon. One less decision, I guess.

Hi Helen, what was the symptoms that gave you a clue that something was wrong with you in 2021, 2 yrs after your hysterectomy?

I had total hysterectomy in July 2022, all went well, no other cells found. I get ck ups every 6 months with my gyno-onco surgeon. So far, thank God I have not noticed anything that makes us believe something is wrong. I did ask get for a ct-scan for my next ck up visit thus coming Aug 2024 just for extra security. I didn't get any treatment or therapy after my surgery. My Onco said that the staging & the grade level and the fact that everything else was negative all pointed out to a good prognosis and it was best for me if they just watch it closely to avoid using unnecessary drugs and causing damage to my body etc etc etc.

But, I do fear the big C coming back to haunt me, mainly because nothing else was done to it to kill any random cells (if any) after surgery. I even dreamed (twice) of me spotting and lots of blood coming out, it is scary 😨 even in a dream. I trust my Surgeon Dr, I went to a good hospital in NYC, she is caring, knowledgeable, smart. Still cancer cells are so malicious that they can turn up anywhere and start causing pain and suffering when you least expect it. In your experience what can you tell me to educate me even more on this reality that changed my life forever.

Any tips or facts about our type of cancer that you can share will be greatly appreciated.
I too had grade 1.

Ps. So far, I try hard to stay calm, busy and focus, I feel great, travel, have fun, enjoy my family & friends, act and look young for my age (68) lol, I help those that need me, I go to church, etc.

I'm forever grateful to God, my doctor & my family for everything..... thanks, irma

@ihndz Irma, I did not have any symptoms associated with the recurrence of my cancer (endometroid adenocarcinoma, FIGO Grade 1, Stage 1). My nurse practitioner found a very tiny polylp on my vaginal cuff cancer surveillance appointment (there had been nothing there 6 months prior). She removed it and sent it to pathology for biopsy. It came back positive for the same cancer I was diagnosed with two years earlier. After conferring with the gynoncologists in her department (Mayo Clinic) she ordered a PET/MR from head to pelvis. It showed nothing suspicious. My nurse practitioner was surprised with this finding as were the doctors thinking that there must have been a tumor forming at, behind, or near the vaginal cuff. With the results of the pathology report on the polyp and the negative results from the PET/MR I was referred to radiation oncology. I then had both external pelvic and internal (brachytherapy). That was two years ago and since then I've been returning every four months for cancer surveillance and there has been no evidence of disease.

Like you, it has been difficult at times for me not to dwell on a recurrence or a new cancer. I try to let those thoughts go.

If you are like me and keep up your cancer surveillance appointments the likelihood is that if anything changes or shows up it will be caught very early. That's what happened with me and for that I'm very grateful.

I do what you do. Travel, enjoy family and friends and I get compliments that I don't look my age (72). I do everything I can to stay healthy but the not-looking-my-age is down to genetics. My father and his family were the same. Do you get those compliments too?