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.

Profile picture for therese73 @therese73

I had my first radiation session yesterday. I can’t deal with the noise. I had my treatment from 4:00-4:30 and I had a huge headache until almost 10:00 pm. They played music but it didn’t take care of the noise. I am ready to ask to be sedated. Any suggestions?
Thanks,

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first have them turn off the music or play what you want at the volume you want. i have them play beatles music on a volume where i really have to focus on the music to hear it. it keeps my attention to the music and not screaming in my mind that i have cancer and need to lay still.

another note, i have sexual trauma in my history and when i discussed with the doctor about a male being present for my treatments she offered to give me anti anxiety medication. i would take the pill an hour before the treatment. i would still be awake and able to cooperate with the staff but i wouldn't be stressed out. i chose not to take meds and just not allow the male to be in the same room as me.

i'm sure if you ask the doctor can offer you the same anti anxiety meds that they were willing to give me.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@therese73 Welcome to Mayo Clinic Connect and our Gynecological Cancers Support Group. I know what a huge shock the diagnosis is that includes the word "cancer". Like you I am 73 years old. I was diagnosed with endometrioid adenocarcinoma Grade 1 Stage 1a in 2019. I had a recurrence (at the vaginal cuff) in 2021 and had 25 sessions of external beam radiation and 2 sessions of brachytherapy. Since then I have kept up with all my cancer surveillance appointments and have been NED (no evidence of disease).

What a huge disappointment that your gyn oncologist could not complete surgery (for a hysterectomy?). Do you know if the plan had been to remove the uterus, fallopian tubes, and ovaries? It is a relief that the PET scan showed no lymph node involvement and the only area that "lit up" was presumably where the endometrial cancer is located.

It sounds like you found an excellent radiation oncologist who has a lot of experience. When do you start the radiation therapy?

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I had my first radiation session yesterday. I can’t deal with the noise. I had my treatment from 4:00-4:30 and I had a huge headache until almost 10:00 pm. They played music but it didn’t take care of the noise. I am ready to ask to be sedated. Any suggestions?
Thanks,

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@therese73 Welcome to Mayo Clinic Connect and our Gynecological Cancers Support Group. I know what a huge shock the diagnosis is that includes the word "cancer". Like you I am 73 years old. I was diagnosed with endometrioid adenocarcinoma Grade 1 Stage 1a in 2019. I had a recurrence (at the vaginal cuff) in 2021 and had 25 sessions of external beam radiation and 2 sessions of brachytherapy. Since then I have kept up with all my cancer surveillance appointments and have been NED (no evidence of disease).

What a huge disappointment that your gyn oncologist could not complete surgery (for a hysterectomy?). Do you know if the plan had been to remove the uterus, fallopian tubes, and ovaries? It is a relief that the PET scan showed no lymph node involvement and the only area that "lit up" was presumably where the endometrial cancer is located.

It sounds like you found an excellent radiation oncologist who has a lot of experience. When do you start the radiation therapy?

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I have Stage IB Grade 2 Endometrial cancer. Because of 3 prior huge abdominal surgeries the Gyn oncologist and her assistant surgeon decided to close me because of dense adhesions. Referred for 25 sessions of External Beam Radiation and 3-5 sessions of Bracytherapy, telling me this is a curative treatment. The Pet Scan showed no lymph node involvement and only a focal hypermetabolic area in the posterior fungus of the uterus. I am 73 years old and because of the sepsis I suffered necessitating all the surgeries am really afraid that this is not going to work. None of the doctors I have seen have given me any statistical information, with the exception of the rad oncologist I am scheduled to do the external beam radiation with. He told me he has cured 4 women with this treatment plan, 2 while he was at Mayo and 2 in his present job. I cry constantly. He told me the gold standard is surgery.

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i decided on my own not to have chemo or radiation. i am going for a biopsy d&c camera inserted polops removed on april 7

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Profile picture for dlgbb @dlgbb

@naturegirl5
Thank you so much for sharing. I will hop over to read those posts as well. I am so happy to hear that radiation went well for you. I think I have made up my mind that I will have the treatment. Then hopefully put this all behind me and move on!

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Glad to hear that you have made a decision and feel good about it. Thanks for letting us know what they said.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@dlgbb Thanks for coming back and letting me know about your follow-up exam. There is a Discussion that I started in our Gynecological Support Group on radiation therapy that you might like to read through. You'll get various perspectives including side effects, if any. Personally, when I had radiation therapy (external and internal) after a recurrence in the vaginal cuff I had very few side effects. I experienced a little fatigue, occasional diarrhea, and that's really all. I continued weightlifting and balance training and went for daily walks. I went for 5 days/week for 5 weeks for external and then 2 treatments of brachytherapy (internal). I met with the radiation oncology nurse and the radiation oncologist weekly to monitor my progress and to discuss any problems I was having.

Discussion: What kind of radiation therapy did you get for your gynecological cancer?

-- https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

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@naturegirl5
Thank you so much for sharing. I will hop over to read those posts as well. I am so happy to hear that radiation went well for you. I think I have made up my mind that I will have the treatment. Then hopefully put this all behind me and move on!

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Profile picture for dlgbb @dlgbb

@naturegirl5 @val64

I had my follow-up today in Calgary, and now I have to make a decision. No chemo is required. Standard of care is to do radiation, but a clinical trial is being offered where there is no radiation because of the POLE mutation - they just observe every three months, and then treat if there is a recurrence. I guess the choice is between being proactive and preventative, or reactive and treating cancer again if it comes back. I am leaning towards doing the radiation. I would rather stop it in its tracks than have to try and get rid of it again. It will be 5 weeks of 5 days a week, 25 treatments - external only.

Jump to this post

@dlgbb Thanks for coming back and letting me know about your follow-up exam. There is a Discussion that I started in our Gynecological Support Group on radiation therapy that you might like to read through. You'll get various perspectives including side effects, if any. Personally, when I had radiation therapy (external and internal) after a recurrence in the vaginal cuff I had very few side effects. I experienced a little fatigue, occasional diarrhea, and that's really all. I continued weightlifting and balance training and went for daily walks. I went for 5 days/week for 5 weeks for external and then 2 treatments of brachytherapy (internal). I met with the radiation oncology nurse and the radiation oncologist weekly to monitor my progress and to discuss any problems I was having.

Discussion: What kind of radiation therapy did you get for your gynecological cancer?

-- https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

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@naturegirl5 @val64

I had my follow-up today in Calgary, and now I have to make a decision. No chemo is required. Standard of care is to do radiation, but a clinical trial is being offered where there is no radiation because of the POLE mutation - they just observe every three months, and then treat if there is a recurrence. I guess the choice is between being proactive and preventative, or reactive and treating cancer again if it comes back. I am leaning towards doing the radiation. I would rather stop it in its tracks than have to try and get rid of it again. It will be 5 weeks of 5 days a week, 25 treatments - external only.

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Diaz,
I have yet to see my Dr post hysterectomy but am interested in radiation and its side effects.
A quick questions for you: What is the dilator you use to prevent scarring after radiation? Is it placed up the rectum and do you still have control of your anus opening? How much longer will you have to use the dilator?
Thanks for any insight you can share:)

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