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

I was diagnosed with adenocarcinoma of the cervix in 2016. After a bilateral salpingo-oophorectomy, I had external beam radiation and brachytherapy completed in 2017. In 2021, I had a metastasis to the left supraclavicular lymph node. I started on Libtayo in October of 2021 and it failed after 3 cycles. I then started chemotherapy with carboplatin and Taxol in March of 2012 and finished in May with no disease progression. In August a metastasis to my bladder was found. I am now planning to start chemotherapy with tisotumab vedotin, an antibody conjugate. This is a last resort treatment and has as many and more side effects than the previous chemotherapy and in clinical trial had a 24% overall response rate.

I’m about a month post-op a radical hysterectomy for Endometrial Cancer, grade 3/2C with all female reproductive organs removed including my cervix, 48 lymph nodes and part of my Omentum.
I suffer from colon and bladder complications post-op. When I pass gas or a bowel movement the pain that engulfs me can make me cry. The pain can be a 9-10/10. The gas never goes up to a 9 or 10 max is a 7.
When I live in a bubble: no stress, 100 ounces of water and green tea a day, stool softeners (my stools are not constipated at all, formed, smaller ) no real stress with movement, focus on relaxing my pelvic floor and lightly rock or slightly tip or twist instead of pushing, much cleaner diet, chew my food throughly, get 8 hours of sleep a night. The primary bowel pain can go down to a 3-7/10
The pain impacts my bladder too. If my bladder is more than half full the pain starts to climb. A full bladder could be a 7/10 pain.
My pain tolerance allowed me to deliver 2 babies at different times completely natural, no pain meds, and move through 2 broken ribs without pain meds.
I’ll be starting radiation soon. I didn’t know the bladder needed to be full. I don’t think I could handle that. Never had bladder issues before. Does it need to be full for Brachytherapy too? How can I protect my colon and bladder when a full bladder is used for the protection?

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.

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.

@naturegirl5
Good morning Helen,
I just wanted to say that if you ever do plan a trip cross country skiing in the Canadian Rockies, you have to visit Canmore, which is just outside of Calgary. This is where the cross country skiing events were held during the 1988 Calgary Olympics. The scenery is breathtaking, as you will see in these pictures. I hope you can make the trip! And if you do, please let me know!

@zhangh73
I did not have any brachy radiation. I had 25 external beam radiation treatments, which I just finished on April 28. Side effects have been fatigue, pelvic and hip pain, and radiation enteritis. All side effects are improving and are just minimally impacting me now. I was stage 1a grade 3.

@zhangh73
Hello! Yes, I have read a lot of the literature too and have seen that as well! I agree - it is a pretty rare mutation, and even then there are additional characteristics that are required to be beneficial. The higher the tumor mutation burden, apparently the better. I believe ultra high was defined as greater than 100 mutations, and mine was greater than 350 mutations. The biggest factor in going forward with radiation for me was that this is still the recommended standard of care at the moment. In the paperwork associated with the clinical trial, under potential risks, cancer recurrence was listed as number one. But I do really believe the time is coming when the standard of care will change to exclude additional treatment.

@dlgbb
Thank you so much for sharing how you get POLE E mutation. You are lucky to have that mutation, I just read an article saying that there is no difference with and without adjuvent treation if has the POLE mutation, and very good prognosis. But only 10% people can have that mutation. I will ask if I can get test for that through tumor cells. Thanks again for your kindness.

@zhangh73 @naturegirl5
Hello!
The Pole mutation was diagnosed from the tumor sample taken after my total hysterectomy. I had my surgery and radiation treatment in Calgary, Alberta, Canada. At the time of my 6 week surgical follow up, I met with a radiation oncologist who discussed the Pole mutation with me. I would like to share with you the information that was given to me. The Pole mutation is associated with very good outcomes, and I was told that the positive outcomes may even offset the high grade of my tumor and the substantial lymphovascular space invasion. Despite these characteristics that were associated with poorer outcomes, I was considered low-risk for recurrence because of the Pole mutation. I was offered the opportunity to enter into a clinical trial with no further treatment - just close follow up and treatment if there was a recurrence. After discussion with my family we decided that I would do the radiation treatment as an insurance policy, just in case. But overall, it was very reassuring to know that such positive outcomes are anticipated. I hope this can provide you with some encouragement. I wish you all the best.