What Kind of Radiation Did You Get for Your Gynecological Cancer?

Posted by Helen, Volunteer Mentor @naturegirl5, Sep 29, 2022

I was diagnosed with endometrioid adenocarcinoma (Stage 1a, FIGO Grade 1) in 2019. I was treated for a recurrence in late 2021 with radiation therapy. I had 25 external beam treatments and 2 brachytherapy treatments. I'll share more details about the lengthy preparation and the actual treatments in a separate post below.

I know of members here who have had or are going to have radiation treatments. Would you like to share your radiation treatments and experiences with one another? This is a great way to support one another.

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

Helen, Volunteer Mentor | @naturegirl5 | Mar 6 11:22am

In reply to @dlgbb "@naturegirl5 Good morning Helen, I got the call yesterday to come for the CT simulation on..." + (show)

@dlgbb It looks like your CT simulation was yesterday? I apologize tat it took me so long to get back to you. We had a blizzard that started on Tuesday evening and went into early this morning (Thursday) and we lost power for a significant period of time. So I'm just now checking back in to Mayo Clinic Connect.

Like you I wasn't terribly frightened before the surgery. In my case I had radiation therapy after a recurrence and just that recurrence was such a jolting shock that for awhile I didn't want to even consider the recommendation of radiation therapy. I didn't know what was going to happen during the CT simulation although in retrospect Mayo Clinic had some very helpful videos I could have watched. I made it through with a lot of help and support from the staff including my radiation oncologist and the technologists who explained everything to me before it happened. When I have a clue what might be in store I do much better.

How did the CT simulation go for you? Was it what you expected and were the staff who were present helpful? And finally, is your radiation therapy scheduled yet?

dlgbb | @dlgbb | Mar 4 7:46am

@naturegirl5 Good morning Helen, I got the call yesterday to come for the CT simulation on Wednesday already. It took me off guard, as I wasn’t expecting the call for 2 weeks. I am looking forward to getting the show on the road, but really emotional for some reason. I wasn’t like this before the surgery - I am not sure what the difference is. Maybe I just need to cry it all out today, and get on with it tomorrow. Suggestions?

Helen, Volunteer Mentor | @naturegirl5 | Feb 28 4:50pm

In reply to @dlgbb "@naturegirl5 Thank you so much for sharing this. I always like to know what to expect..." + (show)

@dlgbb You'll get very practiced with the full bladder! I'm hoping your team gives you lots of information prior to starting the radiation therapy so you know what to expect and what to look for.

dlgbb | @dlgbb | Feb 28 3:22pm

In reply to @naturegirl5 "This is what happened when I had external radiation therapy at Mayo Clinic in Rochester. I..." + (show)

@naturegirl5

This is what happened when I had external radiation therapy at Mayo Clinic in Rochester. I was instructed to start drinking water about 45 minutes to 1 hour before each radiation therapy session. My bladder was supposed to be full for each session as a full bladder protects organs from radiation. In fact, if my bladder was not full enough which the radiation therapists could see on CT - a CT was taken before every radiation session - then they told me and I drank more water.

My name was called from the waiting from in Radiation Oncology and since I had already been informed which dressing area to go to, I went there, changed into my gown, and then waited for the radiation therapists to come and get me. This was generally 5-10 minutes after I changed which worked out well because my bladder was very full. I then went to the external radiation beam room where they asked my name and birthdate and then I laid on the table with my legs in the cradle that was made for me earlier, and that was my only job. Lay down and lay still. There was music playing and I was usually asked what kind of music I liked. Then the radiation therapists (there were always two) positioned me on the table with the use of some lights. They left the room, first ran the CT to check if my bladder was full and then recorded the images as the radiation oncologist looked at the CTs every day. The external beam machine rotated over me and I often zoned out almost falling asleep some days. After the radiation was completed, the external beam machine stopped and I waited until the radiation therapists came to get me. They helped me from the table. I always went to the bathroom first as my bladder was full and then I changed in the dressing room. The radiation session was complete.

I had 25 external radiation beam treatments. After those were completed I had 2 brachytherapy (internal radiation) treatments that I will write about in another post.

I had few side effects from the radiation. I had the expected side effects although mine were minor according to the nurse and the radiation oncologist. I had a few bouts of diarrhea (I took imodium when that happened), a few headaches (I drank more water), and some fatigue for a few days. I lost my appetite a little and lost about 8 pounds. Of course I've since regained my appetite and that weight. Darn.

The radiation oncology nurse and the radiation oncologist met with me weekly. They monitored my vital signs, my weight, and checked for signs of radiation toxicity - side effects. Their conclusion was that I tolerate the 25 treatments well.

Jump to this post

@naturegirl5 Thank you so much for sharing this. I always like to know what to expect ahead of time. To me, the worst part sounds like holding the full bladder! LOL

jeanadair123 | @jeanadair123 | Feb 15 1:03am

I am amazed from reading the comments that nearly everyone had a cast made, I went to Stanford and they did not make me one they just had me situate myself on the table in the same position. I did have side effects, a lot of bleeding in my rectum. I went to Stanford thinking this was the best place to go after reading everyone’s procedure I am beginning to wonder why I didn’t have a cast made. The tiredness did not bother me it was the pain in my rectum and the bleeding every time I had a bowel movement. Hopefully you won’t have this issue.
I had radiation and 5 brachytherapy.
Forgot to mention I started using a dilator 6 weeks after the radiation that was in 2016 and I am down to using it twice a week now. When I first started I was using it everyday, it depends whether or not you have a sexual relationship?

paz1956 | @paz1956 | Nov 22, 2024

In reply to @naturegirl5 "@paz1956 I don't have any long term side effects from the brachytherapy. I don't have any..." + (show)

@naturegirl5 - thank you for your helpful comments and suggests. I’m so glad God lead me to this group you all have been very helpful. It’s hard navigating cancer diagnosis and following your doctors recommendation. I’m ok just waiting for my oncologist surgery follow up appointment & then brachytherapy end of Dec. had no issues with surgery
Hope you are doing well!
Thank You!!!!

Helen, Volunteer Mentor | @naturegirl5 | Nov 22, 2024

In reply to @paz1956 "@naturegirl5 Thank You so much for the information it was very helpful. Do you have any..." + (show)

@paz1956 I don't have any long term side effects from the brachytherapy. I don't have any urinary output problems or incontinence. I purchased a set of dilators that allowed me to start with a narrow one and gradually increase the width over time.

Intimate Rose Dilators:

-- https://www.intimaterose.com/collections/vaginal-dilators

Yes, the cancer diagnosis in a sense is just the beginning of the process. There is lots to do following diagnosis and treatment to keep yourself healthy.

How are you feeling today?

jc100 | @jc100 | Nov 21, 2024

In reply to @paz1956 "That was great you had no side effects! Thank You!! Take Care" + (show)

Thank you, you take care too!

paz1956 | @paz1956 | Nov 21, 2024

In reply to @jc100 "I had three sessions of brachytherapy in December 2023. There were no side effects. I do..." + (show)

That was great you had no side effects! Thank You!!
Take Care

jc100 | @jc100 | Nov 21, 2024

In reply to @paz1956 "@naturegirl5 Thank You so much for the information it was very helpful. Do you have any..." + (show)

I had three sessions of brachytherapy in December 2023. There were no side effects. I do need to use a dilator once to twice per week. It was not a problem.

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