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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.

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Replies to "I was diagnosed 12/21 and had a complete hysterectomy 1/22. Lymph nodes were clear and was..."

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!!

Exactly. On a post previous I spoke of a endo stage one, treated no further then hysterectomy. Well, long story short, she was treated kinda similar, and was eventually given a scan, but still they said showed nothing, but she was having some sort of symptoms. I can remember. Nevertheless, down the road, like in 9 mos or something she still issues, and had a MRI, type scan which revealed went to I think breast/ other, then to her brain. People were inquiring to her, responses stopped which was heartbreaking and Again I say after reading that, I would always continue other care somehow in someway, and never let up. Better safe then sorry, be proactive. I'm stage 3 endo, high grade, pole mutated.. They say they do better, etc, which I pray true, but I have 1000% proactive stance myself. Prevention however info is can find and do. Prayers for you 🙏🏻