Radiation or not after surgery for endometrial cancer?

Posted by marceyw @marceyw, Feb 4, 2024

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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@again2 This is difficult and the decision you make is really up to you. So many people and especially family members want their loved one to keep in treatment but ultimately it's up to the individual.

One of my friends had carboplatin chemotherapy for a different kind of cancer (Stage IV Colorectal). She had neuropathy, joint, and muscle pain. Her chemotherapy was in 2023 and early 2024. She went to physical therapy and said it was really helpful. She is not longer in pain however the carbo affected her feet so much that she feels "clumsy" when she walks but is no longer in pain.

You are the best judge for yourself. You could get another opinion, ask if there is a clinical trial you could enter or you can decide no more treatment. Is there a social worker in the oncology unit you can talk with? You could ask your oncologist or someone else on that unit for a referral to a social worker. You'd want someone whose specialty is oncology.

There is a neuropathy support group here on Mayo Clinic Connect. Would you like to post there for feedback?

Mayo Clinic Connect: Neuropathy Support Group.

-- https://connect.mayoclinic.org/group/neuropathy/

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I am so sorry for all that you are going through. Have you considered a second opinion?
Palliative care for comfort, whether you proceed with treatment or not?
Sending hugs.

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I'm in the exact same position as you. I was diagnosed with serous endometrial intraepithelial carsinoma, stage 1 two months ago. I decided to use the "wait and see" aproach after my hysterectomy, with no chemo. My oncologist is okay with this but my primary care physician wants me to get a second opinion and reconsider. What scares me is a post I read here just this morning. Another member went from stage 1 to stage 4, and is now considering "death with dignity". I was shocked and just sent a few questions to her for my own edification. I'm so confused.

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As you can probably see from my previous posts, I declined my oncology surgeon's recommendation after hysterectomy of chemo-radiation (25 weeks I think). I was Grade 1 Stage 2 (invasion into cervix of under 10%). I did do an experimental Brachy therapy of two high dose treatments at MD Anderson. I did not reject the original recommendation lightly. I had two second opinions from geographically diverse centers, and I also saw the local radiologist that the surgeon recommended. None agreed with the chemo recommendation, but all but one recommended some form of radiation -- ranging from full external beam to localized internal. One other option was to "wait and see." When I went with the 2 Brachys, I felt that I had done enough to research my options and am okay with this decision no matter the outcome years from now. If you can, try to get other opinions. It's not hard to do it virtually.
I am having constant pain in my right hip radiating down my leg to the outside of my knee. This occurred after the hysterectomy but before the Brachy, and it got worse before it now is starting to get better with PT. Everyone wants to blame the Brachy, but it was definitely trauma to my L4-L5 and S2 from the surgery. If not for this, I would say that the Brachy was the simplest procedure option that was out there. It was not painful for me at all, but you do have to dialate your vaginal area a few times a week to prevent stenosis.

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I had uterus cancer my surgeon said I didn’t need radiation or brachytherapy because he got it all. There is a 1% chance of recurrence. Ha! 8 years later I got recurrence in my vaginal cuff, which resulted in brachytherapy and radiation. Just a note when you have brachytherapy it is necessary to use a dilator for the rest of your life unless you have an active sex like. For the first few years I used it every day, then I alternated it. Now 10 years later I use it every four days. If you don’t use a dilator your doctor will be unable to use a speculum in the future.

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Profile picture for RefluxGoAway @njp515

As you can probably see from my previous posts, I declined my oncology surgeon's recommendation after hysterectomy of chemo-radiation (25 weeks I think). I was Grade 1 Stage 2 (invasion into cervix of under 10%). I did do an experimental Brachy therapy of two high dose treatments at MD Anderson. I did not reject the original recommendation lightly. I had two second opinions from geographically diverse centers, and I also saw the local radiologist that the surgeon recommended. None agreed with the chemo recommendation, but all but one recommended some form of radiation -- ranging from full external beam to localized internal. One other option was to "wait and see." When I went with the 2 Brachys, I felt that I had done enough to research my options and am okay with this decision no matter the outcome years from now. If you can, try to get other opinions. It's not hard to do it virtually.
I am having constant pain in my right hip radiating down my leg to the outside of my knee. This occurred after the hysterectomy but before the Brachy, and it got worse before it now is starting to get better with PT. Everyone wants to blame the Brachy, but it was definitely trauma to my L4-L5 and S2 from the surgery. If not for this, I would say that the Brachy was the simplest procedure option that was out there. It was not painful for me at all, but you do have to dialate your vaginal area a few times a week to prevent stenosis.

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I align with you thinking but have to learn more about brachy, especially if you have to continue to dialate yourself for the rest of your life. I'm hoping to do nothing, but now I'm reading the post below from jeanadair which is very concerning!

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Profile picture for jeanadair123 @jeanadair123

I had uterus cancer my surgeon said I didn’t need radiation or brachytherapy because he got it all. There is a 1% chance of recurrence. Ha! 8 years later I got recurrence in my vaginal cuff, which resulted in brachytherapy and radiation. Just a note when you have brachytherapy it is necessary to use a dilator for the rest of your life unless you have an active sex like. For the first few years I used it every day, then I alternated it. Now 10 years later I use it every four days. If you don’t use a dilator your doctor will be unable to use a speculum in the future.

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Wow! It took 8 years to manifest? I would think I was cured after that length of time, but I guess we can never know. How did you know it returned? My fear is that it will return without me catching it early.

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We previously lived in Texas where I had the surgery, we returned to California in 2013. I had annual checkups in Texas with a speculum. I went to 3 gynecologist specialists who said they didn’t feel it was necessary to use a speculum because there was only a 1% chance of recurrence. I kept going to doctors and finally found one who would use a speculum she said I am only doing it because you are so insistent. She was shocked when she saw that I had a growth so she did a biopsy which showed cancer. I checked with Sutter, then went to Stanford and the Mayo Clinic in Minnesota. I decided on Stanford because they seemed more aggressive in my treatment doing what the others didnot recommend. I still see my gynecologist oncologist annually and a gynecologist I trust in town, so I get checked every 6 months. When I look back I don’t know how I did the dilator every day for 2 years before I went to 4 times a week. It’s imperative that you do this so you can have examinations in the future.must say the brachytherapy wasn’t great.you have to be proactive and pushy it’s your life no one will keep track of it like you do.

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Profile picture for RefluxGoAway @njp515

As you can probably see from my previous posts, I declined my oncology surgeon's recommendation after hysterectomy of chemo-radiation (25 weeks I think). I was Grade 1 Stage 2 (invasion into cervix of under 10%). I did do an experimental Brachy therapy of two high dose treatments at MD Anderson. I did not reject the original recommendation lightly. I had two second opinions from geographically diverse centers, and I also saw the local radiologist that the surgeon recommended. None agreed with the chemo recommendation, but all but one recommended some form of radiation -- ranging from full external beam to localized internal. One other option was to "wait and see." When I went with the 2 Brachys, I felt that I had done enough to research my options and am okay with this decision no matter the outcome years from now. If you can, try to get other opinions. It's not hard to do it virtually.
I am having constant pain in my right hip radiating down my leg to the outside of my knee. This occurred after the hysterectomy but before the Brachy, and it got worse before it now is starting to get better with PT. Everyone wants to blame the Brachy, but it was definitely trauma to my L4-L5 and S2 from the surgery. If not for this, I would say that the Brachy was the simplest procedure option that was out there. It was not painful for me at all, but you do have to dialate your vaginal area a few times a week to prevent stenosis.

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Oh wow, reading about the damage to your lower back is concerning because I'm due to have a hysterectomy on Aug 20th. This doctor has very good reviews and is loved by many people as seen on tik tok video replies my daughter has made of my cancer journey. I already have severe back issues for 20 years so I'm praying I come out of this with no injuries to other organs or areas of my body.

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Profile picture for carol1024 @carol1024

Oh wow, reading about the damage to your lower back is concerning because I'm due to have a hysterectomy on Aug 20th. This doctor has very good reviews and is loved by many people as seen on tik tok video replies my daughter has made of my cancer journey. I already have severe back issues for 20 years so I'm praying I come out of this with no injuries to other organs or areas of my body.

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Let your surgeon and the operating room staff know of your back issues. With me, I (and my surgeon) were so concerned about my giant hiatal hernia and avoiding trauma to that area that I really didn't care about anything else. My surgeon was also extremely highly rated, and I felt pretty darn good about three days post surgery. I had soreness for sure, but I thought it was routine, and I was telling everybody what a piece of cake the surgery was. The pain just never went away, and got worse. Pace yourself; don't jump back into regular routines for at least 8-12 weeks. (I flew for 3 hours at 6 weeks). Don't be tempted to sit up in bed in a "V" position, put a pillow under your knees, try to avoid doing anything that twists your torso. Anyway, your medical professionals will tell you all these things; just make sure to follow their instructions. Best of luck and keep us posted on your progress!

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