1. < Gynecologic Cancers

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.

kforrest | @kforrest | Feb 26 8:59am

i am sorry for what have been through.

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dlgbb | @dlgbb | Feb 26 10:24am

Tomorrow is my 6 week surgical follow-up after total hysterectomy, removal of fallopian tubes, ovaries, and lymph node testing. I have not spoken to my oncologist yet about results, but have been able to see them online. I am so nervous about what follow up is going to be, because of results that are both good and bad. I have a grade 3 endometrioid carcinoma. Only minimal spread to myometrial wall (11%), but substantial lymphovascular invasion. I know both those thing are indicators for recurrence and poor prognosis. On the other hand, I have tested positive pathogentic POLE mutation, which is great news! I am just wondering if the "good" compensates for the "bad", and if there will be follow-up, like radiation. I have read that with POLEmut, the recommendation is to back off further treatment. I am just anxious and want to move on, but also feel nervous about potentially doing nothing further. Yesterday I also had a echocardiogram to check for what looks like a flailing mitro valve prolapse. Everytime there is light at the end of the tunnel, something else. Geesh.

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Feb 26 4:56pm
In reply to @dlgbb "Tomorrow is my 6 week surgical follow-up after total hysterectomy, removal of fallopian tubes, ovaries, and..." + (show)
@dlgbb

Tomorrow is my 6 week surgical follow-up after total hysterectomy, removal of fallopian tubes, ovaries, and lymph node testing. I have not spoken to my oncologist yet about results, but have been able to see them online. I am so nervous about what follow up is going to be, because of results that are both good and bad. I have a grade 3 endometrioid carcinoma. Only minimal spread to myometrial wall (11%), but substantial lymphovascular invasion. I know both those thing are indicators for recurrence and poor prognosis. On the other hand, I have tested positive pathogentic POLE mutation, which is great news! I am just wondering if the "good" compensates for the "bad", and if there will be follow-up, like radiation. I have read that with POLEmut, the recommendation is to back off further treatment. I am just anxious and want to move on, but also feel nervous about potentially doing nothing further. Yesterday I also had a echocardiogram to check for what looks like a flailing mitro valve prolapse. Everytime there is light at the end of the tunnel, something else. Geesh.

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@dlgbb I hope your 6 week follow-up goes well. Do you have some questions written that you can ask your oncologist? You have good questions here that you can start with and in your place these are questions I would be asking. I'd also ask about the mitral valve prolapse and if that is something to be considered in your cancer care treatment. I'm 73-years-old and it seems like every time I'm ahead something new shows up to address. And I need to see yet another specialist. Sound familiar?

Will you please come back here and let me know what you learn at your appointment tomorrow?

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1 reply
dlgbb | @dlgbb | Feb 26 5:28pm
In reply to @naturegirl5 "@dlgbb I hope your 6 week follow-up goes well. Do you have some questions written that..." + (show)
@naturegirl5

@dlgbb I hope your 6 week follow-up goes well. Do you have some questions written that you can ask your oncologist? You have good questions here that you can start with and in your place these are questions I would be asking. I'd also ask about the mitral valve prolapse and if that is something to be considered in your cancer care treatment. I'm 73-years-old and it seems like every time I'm ahead something new shows up to address. And I need to see yet another specialist. Sound familiar?

Will you please come back here and let me know what you learn at your appointment tomorrow?

Jump to this post

I sure will. I am 58, and until this past fall, a picture of health and fitness! This is all so bizarre.

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beebe | @beebe | Feb 27 7:41am

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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dlgbb | @dlgbb | Feb 27 8:24pm

@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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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Feb 28 9:08am
In reply to @dlgbb "@naturegirl5 @val64 I had my follow-up today in Calgary, and now I have to make a..." + (show)
@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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1 reply
dlgbb | @dlgbb | Feb 28 9:48am
In reply to @naturegirl5 "@dlgbb Thanks for coming back and letting me know about your follow-up exam. There is a..." + (show)
@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/

Jump to this post

@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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1 reply
val64 | @val64 | Feb 28 9:57am
In reply to @dlgbb "@naturegirl5 Thank you so much for sharing. I will hop over to read those posts as..." + (show)
@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!

Jump to this post

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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kforrest | @kforrest | 6 days ago

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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