Radiation or not after surgery for endometrial cancer?

Posted by marceyw @marceyw, Feb 4 9:49pm

I was diagnosed with early stage endometrial cancer at Christmas. Had complete hysterectomy on 1/9/24. There was no cancer in the sentinel lymph nodes, ovaries or tubes. My doctor is suggesting brachytherapy to cut my 10% chance of recurrence to 5%. I’m concerned about the side effects. Has anyone been thru this and what are the possible side affects of this type of radiation? Dr said I don’t have the harmful P53 gene but do have a gene that would qualify me for immunotherapy if it were to come back. Really torn about what to do next. Would like to think I could fight the return with diet and lifestyle. Ideas and experiences appreciated.

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@val64

External beam radiation (EBRT), which is apparently what you had, has many more immediate and long-term side-effects than does vaginal brachytherapy, where the radiation is very short-range, and really only affects the vaginal wall. This is clear both from people on this forum and from clinical trials on these procedures. So your experiences probably aren't so relevant to @marceyw's decision.

I'm sorry that you're still having side effects and that your cancer came back anyway. That's really rotten. (I know; mine came back 10 months after I finished chemo and brachytherapy. I have been wondering if my outcome would have been better if I had had EBRT, and I'm working on trying to find someplace where I can get it done now.)

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Well now I don't know what kind of radiation therapy I had inasmuch as it was performed vaginally. I always thought I'd had internal. I was scheduled for 2 rounds of a different radiation therapy and the day before my 1st appt. it was suddenly canceled. I will ask the oncologist when I see him in a couple of weeks.
Thank you for this.

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@again2

I had 25 rounds of radiation after my endometrial cancer surgery in 2020. I went along with whatever the doctor said and never questioned the oncologist/surgeon,radiologist/hemotologist. Now that I am more knowledgeable I would never have radiation again. It was brutal while having it and all these years later I have late side effects that have been very difficult to live with.
I had recurrent endo cancer earlier this year with 6 rounds of chemo and keytruda and finished up in May. Pet scan showed all clear and had another petscan in Nov. Next one is Feb.21. I will be on maintenance as the very tiny cells were impossible to remove. As you all know,treatment after the first time is much more difficult. My vision is poor, as is my hearing.Neuropathy in hands and feet make like difficult and the joint pain is tough.
All of you who have praised radiation have been very fortunate but not every one has the same experience.

Jump to this post

External beam radiation (EBRT), which is apparently what you had, has many more immediate and long-term side-effects than does vaginal brachytherapy, where the radiation is very short-range, and really only affects the vaginal wall. This is clear both from people on this forum and from clinical trials on these procedures. So your experiences probably aren't so relevant to @marceyw's decision.

I'm sorry that you're still having side effects and that your cancer came back anyway. That's really rotten. (I know; mine came back 10 months after I finished chemo and brachytherapy. I have been wondering if my outcome would have been better if I had had EBRT, and I'm working on trying to find someplace where I can get it done now.)

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I had 25 rounds of radiation after my endometrial cancer surgery in 2020. I went along with whatever the doctor said and never questioned the oncologist/surgeon,radiologist/hemotologist. Now that I am more knowledgeable I would never have radiation again. It was brutal while having it and all these years later I have late side effects that have been very difficult to live with.
I had recurrent endo cancer earlier this year with 6 rounds of chemo and keytruda and finished up in May. Pet scan showed all clear and had another petscan in Nov. Next one is Feb.21. I will be on maintenance as the very tiny cells were impossible to remove. As you all know,treatment after the first time is much more difficult. My vision is poor, as is my hearing.Neuropathy in hands and feet make like difficult and the joint pain is tough.
All of you who have praised radiation have been very fortunate but not every one has the same experience.

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Hello. I had 3 brachytherapy treatments and they could not have been easier. The rad team was wonderful maintaining my privacy. Don’t know if they follow the same protocol everywhere but I was given “underwear “ with an opening fir the applicator so you didn’t feel so exposed. Everyone was so wonderful! The anticipation is so much worse than the procedure. Had no side or after effects. Take care

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@marceyw

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.

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@marceyw Your experience for the hysterectomy was very much like mine. Have you decided if you will get another opinion regarding the recommendation from your oncologist about brachytherapy? Are you still on the fence about this?

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@marceyw

I should know more after my appt with the radiologist on the 20th. She comes highly recommended. I’m trying to write down all of my questions. Thank you for responding.

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You ate so welcome. All the best.

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I had three sessions of brachytherapy and had no side effects at all, no pain or bleeding. I do have to use a dilator once a week to prevent adhesion.

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@val64

I also had 3 treatments with brachytherapy and think that it is worth doing. It is somewhat uncomfortable and very undignified for 10-15 min each time. I had no immediate side effects. After a month or so you need to either start using a vaginal dilator or engage in sexual activity to avoid long term issues.

If there are stray cancer cells in your body, diet and lifestyle probably won't do much to prevent recurrence.

If your cancer was Grade 1 or 2, a recurrence would probably still be curable, but that's still really worth avoiding if possible.

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I absolutely would like to avoid any recurrence so am leaning toward the brachytherapy. Thank you!

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@may27

I had 5 sessions of brachytherapy (for stage 1b figo 1 endometriod
adenocarcinoma), and had no problems at all either during the course of treatments, nor any side effects afterward. (They do recommend dilator use several times a week for 10 min forever afterward to prevent vaginal scar tissue which can occur). I too had been worried about any possible side effects, but knew that I would never forgive myself if the cancer came back and I had not done everything possible to reduce the odds…

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I haven’t heard of the dilator but that is a good thing to ask about at my first appt to discuss this on the 20th. It is such a relief to hear that you did not have any major side effects. I’m praying for wisdom and I’m like you - wanting to do all I can. My Mom died in her 50s of pancreatic cancer and I’m scheduled for genetic testing.

I’m researching diet changes to help prevent recurrence.

Thank you for this information.

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@sam1108

Hello @marceyw

Maybe we can help each other.

My grandmother (age 88) stage 2 endometrial carcinosarcoma with spread to cervix just completed 3 brachytherapy treatments and 5 weeks of radiation. Other than gas and diarrhea, she did not have any other side effects. One of the brachytherapy treatments was uncomfortable for her (the removal of the applicator) as she was awake and refused pain medication. Following that, she did request medication and they ended up just sedating her briefly to remove.

She is scheduled for a hysterectomy on Tuesday and would really like your input on the recovery. Her surgeon did NoT want to operate first- hence why she did RT before surgery.

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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.

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