Radiation or not after surgery for endometrial cancer?

I had the complete hysterectomy and several nodes removed on 1/9. I am feeling remarkably well. Since it was done robotically through 5 small incisions and removed vaginally, I didn’t take pain medication for more than 4 days. Then I moved to Tylenol for another 3-4 days. I haven’t had to have anything else. There is still a lot of fatigue and my other organs trying to sort themselves out to their new spots when I cough or laugh. I still have to restrict heavy lifting for a couple of weeks. However, I’ve been able to return to running our business and cooking meals. I can drive again. I’d say fatigue and moving or stretching wrong causes the most discomfort. Prayers that your Grandmother does well.

Bless your heart, what is with no scans!? What kind, stage was yours? 76% infiltrated and no scans??? Unreal

I’m sorry you went through all of that in finding the recurrence! I also did NOT have any follow up scans ordered. What’s up with that?! Just brief exams and check ins. My infiltration was 76%. In hindsight I’m shaking my head at the aftercare. But, we are both still here and have our voices. Thanks for sharing your story!!

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.

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

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.