Radiation or not after surgery for endometrial cancer?

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

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

Thank you so much! I think it's horrible that practitioners are making cancer even more horrible to deal with than it already is!

Glad you are getting another opinion-especially from someone with whom you have trust and a level of comfort.
It just doesn’t seem right for a patient to be in limbo for a long time. My experience is that if it doesn’t seem right, find a better practitioner and do so with haste. Hope you get what’s best for your recovery! Best wishes.

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! 😉

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!

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?

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 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.

@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?