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.

@naturegirl5

@ihndz Irma, I did not have any symptoms associated with the recurrence of my cancer (endometroid adenocarcinoma, FIGO Grade 1, Stage 1). My nurse practitioner found a very tiny polylp on my vaginal cuff cancer surveillance appointment (there had been nothing there 6 months prior). She removed it and sent it to pathology for biopsy. It came back positive for the same cancer I was diagnosed with two years earlier. After conferring with the gynoncologists in her department (Mayo Clinic) she ordered a PET/MR from head to pelvis. It showed nothing suspicious. My nurse practitioner was surprised with this finding as were the doctors thinking that there must have been a tumor forming at, behind, or near the vaginal cuff. With the results of the pathology report on the polyp and the negative results from the PET/MR I was referred to radiation oncology. I then had both external pelvic and internal (brachytherapy). That was two years ago and since then I've been returning every four months for cancer surveillance and there has been no evidence of disease.

Like you, it has been difficult at times for me not to dwell on a recurrence or a new cancer. I try to let those thoughts go.

If you are like me and keep up your cancer surveillance appointments the likelihood is that if anything changes or shows up it will be caught very early. That's what happened with me and for that I'm very grateful.

I do what you do. Travel, enjoy family and friends and I get compliments that I don't look my age (72). I do everything I can to stay healthy but the not-looking-my-age is down to genetics. My father and his family were the same. Do you get those compliments too?

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@naturegirl5 Hi Helen, YES i get that compliment often. For years I was even id at casinos because i looked 18 at 30. I'm a short lady 4"11 and a healthy weight. Like you, i think it has to do with genes, in that regards I think that we are very lucky, 😊.

Back to our Big C issue, if i was in my 80's i wouldn't be giving this so much thought but in my 60's and two young grandsons it scares me a lot to miss on their future lives too soon.

I will keep hope up, check ups and stay as healthy as possible 🙏
Thanks for your kind words, it helped me feel good and your advice helped me too. Take care of yourself and good luck to you and everyone else here looking for info or a word of comfort....i read almost all the posts. Regards, irma

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@colleenyoung

@acktiv1, I hope you were able to attend on Zoom the July meeting. If not, please see the info for the August meeting here:
- Gynecologic Cancer Support Meeting: Women of S-Teal https://connect.mayoclinic.org/event/gynecologic-cancer-support-group-women-of-s-teal-11/

All are welcome. You don't have to be a Mayo Clinic patient although it is hosted by Mayo Clinic social workers.

See all Events here: https://connect.mayoclinic.org/events/

Naturally, you also have the support 24/7 on this forum too. 🙂

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Thank you so much, Colleen. I didn’t know about the Zoom in July, but thanks to you have registered for the one in August. I needed this kind of place so intensely a year and a half ago when I was diagnosed and treated for Stage 1B Grade 3 endometrial cancer. I am grateful for the availability now.

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@acktiv1

Thank you! I’ll look for that information.

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@acktiv1, I hope you were able to attend on Zoom the July meeting. If not, please see the info for the August meeting here:
- Gynecologic Cancer Support Meeting: Women of S-Teal https://connect.mayoclinic.org/event/gynecologic-cancer-support-group-women-of-s-teal-11/

All are welcome. You don't have to be a Mayo Clinic patient although it is hosted by Mayo Clinic social workers.

See all Events here: https://connect.mayoclinic.org/events/

Naturally, you also have the support 24/7 on this forum too. 🙂

REPLY
@naturegirl5

@acktiv1 I'm so glad you found us and that we can offer support. Please check out any support groups that meet online through Mayo Clinic. I know there is a Gynecological Cancer support group that meets and when the next meeting is coming up you will see a notice on the right side of your screen.

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Thank you! I’ll look for that information.

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@acktiv1

Thanks! I looked for emotional support groups, talks and information at the large cancer department of the treating hospital. Their marketing department is way ahead of their actual support. I got no real information about my treatment choices so I depended on Google. I have just discovered your site and wish I had discovered it sooner.

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@acktiv1 I'm so glad you found us and that we can offer support. Please check out any support groups that meet online through Mayo Clinic. I know there is a Gynecological Cancer support group that meets and when the next meeting is coming up you will see a notice on the right side of your screen.

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@naturegirl5

@acktiv1 I'm happy to hear that you are doing so well and that you have no regrets about your treatment decision. What kind of support would you like to have had in the past or now from the large teaching hospital where you were treated?

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Thanks! I looked for emotional support groups, talks and information at the large cancer department of the treating hospital. Their marketing department is way ahead of their actual support. I got no real information about my treatment choices so I depended on Google. I have just discovered your site and wish I had discovered it sooner.

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@acktiv1

I had surgery for Stage 1B Grade 3 endometrial cancer a year and a half ago. My oncologist recommended radiation five days a week for 5 weeks. I didn’t feel strong enough physically or emotionally to do that so I opted for three brachytherapy treatments. So far so good! I definitely have the same recurrence anxiety everyone seems like have and wish the large teaching hospital where I was treated offered support. I’ve not regretted my treatment decision but I’m in my eighties!

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@acktiv1 I'm happy to hear that you are doing so well and that you have no regrets about your treatment decision. What kind of support would you like to have had in the past or now from the large teaching hospital where you were treated?

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I was worried about side effects of brachytherapy, too, but found it fast and very tolerable. I felt quite tired the day of treatment, but that was it.
Good luck to you.

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I had surgery for Stage 1B Grade 3 endometrial cancer a year and a half ago. My oncologist recommended radiation five days a week for 5 weeks. I didn’t feel strong enough physically or emotionally to do that so I opted for three brachytherapy treatments. So far so good! I definitely have the same recurrence anxiety everyone seems like have and wish the large teaching hospital where I was treated offered support. I’ve not regretted my treatment decision but I’m in my eighties!

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@ihndz

Hi Helen, what was the symptoms that gave you a clue that something was wrong with you in 2021, 2 yrs after your hysterectomy?

I had total hysterectomy in July 2022, all went well, no other cells found. I get ck ups every 6 months with my gyno-onco surgeon. So far, thank God I have not noticed anything that makes us believe something is wrong. I did ask get for a ct-scan for my next ck up visit thus coming Aug 2024 just for extra security. I didn't get any treatment or therapy after my surgery. My Onco said that the staging & the grade level and the fact that everything else was negative all pointed out to a good prognosis and it was best for me if they just watch it closely to avoid using unnecessary drugs and causing damage to my body etc etc etc.

But, I do fear the big C coming back to haunt me, mainly because nothing else was done to it to kill any random cells (if any) after surgery. I even dreamed (twice) of me spotting and lots of blood coming out, it is scary 😨 even in a dream. I trust my Surgeon Dr, I went to a good hospital in NYC, she is caring, knowledgeable, smart. Still cancer cells are so malicious that they can turn up anywhere and start causing pain and suffering when you least expect it. In your experience what can you tell me to educate me even more on this reality that changed my life forever.

Any tips or facts about our type of cancer that you can share will be greatly appreciated.
I too had grade 1.

Ps. So far, I try hard to stay calm, busy and focus, I feel great, travel, have fun, enjoy my family & friends, act and look young for my age (68) lol, I help those that need me, I go to church, etc.

I'm forever grateful to God, my doctor & my family for everything..... thanks, irma

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@ihndz Irma, I did not have any symptoms associated with the recurrence of my cancer (endometroid adenocarcinoma, FIGO Grade 1, Stage 1). My nurse practitioner found a very tiny polylp on my vaginal cuff cancer surveillance appointment (there had been nothing there 6 months prior). She removed it and sent it to pathology for biopsy. It came back positive for the same cancer I was diagnosed with two years earlier. After conferring with the gynoncologists in her department (Mayo Clinic) she ordered a PET/MR from head to pelvis. It showed nothing suspicious. My nurse practitioner was surprised with this finding as were the doctors thinking that there must have been a tumor forming at, behind, or near the vaginal cuff. With the results of the pathology report on the polyp and the negative results from the PET/MR I was referred to radiation oncology. I then had both external pelvic and internal (brachytherapy). That was two years ago and since then I've been returning every four months for cancer surveillance and there has been no evidence of disease.

Like you, it has been difficult at times for me not to dwell on a recurrence or a new cancer. I try to let those thoughts go.

If you are like me and keep up your cancer surveillance appointments the likelihood is that if anything changes or shows up it will be caught very early. That's what happened with me and for that I'm very grateful.

I do what you do. Travel, enjoy family and friends and I get compliments that I don't look my age (72). I do everything I can to stay healthy but the not-looking-my-age is down to genetics. My father and his family were the same. Do you get those compliments too?

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