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.

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Brachytherapy is internal radiation. In my case an applicator was used to place a high dose radiation “seed” at the location of the vaginal cuff to lower the chances of recurrence as often times this is where a recurrence occurs. The brachytherapy is targeted so as to spare other organs. You first have a CT simulation to identify the location. The entire procedure takes minutes and is a little uncomfortable but not painful I had three treatments following external beam radiation and chemotherapy fir stage 3 endometrial cancer

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Profile picture for marceyw @marceyw

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

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What does branch therapy mean? Is that is what's recommended before or after a full hysterectomy, to lower risk of reoccurrence?

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Profile picture for jeanadair123 @jeanadair123

Thank you for yours also.
I find I am constantly exhausted from dealing with this, I have had cancer 3 times, uterus, recurrence vaginal cuff and breast. My husband has has prostrate, recurrence twice currently going through it again and lung cancer. But we manage to keep fighting on. My friends don’t understand that I think about C they should live a day in my life. Amazingly though we are both healthy. Although my husband has the beginning of MCI. I just live one day at a time and we enjoy each other and life.

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Keep fighting! I'm trying to create an environment in my body where cancer is less likely to grow so take supplements. I want to avoid "snake oil" as I know nothing will be a cure, but I combed through sites like this and found what PEOPLE WITH NO RECURRENCES take. No one knows if the supplements truly played a role, but I see hope and generated a very extensive list; reducing it to a few based on peoples experiences and my own research. Until a cure is found, let's share and empower each other to fight from all possible fronts.

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Profile picture for inquirer @inquirer

OMG! This is the perfect example of why it's important to advocate for ourselves. It was logical, simply common sense, for doctors to examine your vaginal area yet you still had to fight for it (and save your own life!). For my hystorectomy, I fought for open surgery. Had to travel distances and even fly from California to New York to find oncologists who would do it. After the surgery, the surgeon said it was a good thing I insisted on open surgery because if they had done it robotically, the cancer likely would have spilled into my abdomen. We must continue to follow our instincts and go with our gutt feelings. Thank you, for that story.

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Thank you for yours also.
I find I am constantly exhausted from dealing with this, I have had cancer 3 times, uterus, recurrence vaginal cuff and breast. My husband has has prostrate, recurrence twice currently going through it again and lung cancer. But we manage to keep fighting on. My friends don’t understand that I think about C they should live a day in my life. Amazingly though we are both healthy. Although my husband has the beginning of MCI. I just live one day at a time and we enjoy each other and life.

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Profile picture for carol1024 @carol1024

I'm having the robotic surgery and it's easier on the body than cutting you open.

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I did not have open surgery. Mine was five little port holes for the arms of the robot to go in.

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Profile picture for RefluxGoAway @njp515

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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I'm having the robotic surgery and it's easier on the body than cutting you open.

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Profile picture for jeanadair123 @jeanadair123

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.

Jump to this post

OMG! This is the perfect example of why it's important to advocate for ourselves. It was logical, simply common sense, for doctors to examine your vaginal area yet you still had to fight for it (and save your own life!). For my hystorectomy, I fought for open surgery. Had to travel distances and even fly from California to New York to find oncologists who would do it. After the surgery, the surgeon said it was a good thing I insisted on open surgery because if they had done it robotically, the cancer likely would have spilled into my abdomen. We must continue to follow our instincts and go with our gutt feelings. Thank you, for that story.

REPLY
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.

Jump to this post

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!

REPLY
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.

Jump to this post

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.

REPLY

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.

REPLY
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