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.

@naturegirl5

I will post more on my experiences in external radiation therapy (pelvis) and then another post for brachytherapy (internal radiation therapy).

All my best wishes and positive energy to you, @rainyp. Will you let me know the date you get your start date?

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Looks like Monday 10/10. The women I spoke with said it was for a consult , as I am getting my treatments closer to home, not with the Radiation Oncologist I met with on Thursday). Hoping its for the CT Simulation and not just a meet and greet. Im going to have to call and confirm. and PS my biopsies came back and confirmed exactly what the team expected.(DIAGNOSIS: Squamous cell carcinoma of the vagina, cT3N1M0, FIGO stage III) Bad enough, but thankfully no additional surprises. Counting my blessings

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@naturegirl5
Thank you so much for sharing your experience with us. I am about to go through this process and am a bit nervous.

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@naturegirl5

The beginning of my pelvic radiation therapy journey was the CT simulation. The staff first took me to a dressing room where I changed into a gown that tied in the back. She explained to me that each time I came for radiation therapy I would be changing in a similar room in a designated suite of rooms. The changing room has a lock and the key can be worn around the wrist.

I was then accompanied to the CT simulation room. First, they made a sort of "cradle" for my legs. This was a casting that was made while I laid on my back. The purpose is that every time I came to radiation therapy my cast would be on the table and I could then lie in the exact same position. That cast was marked with my name and eventually placed in the room to make it available every day I arrived for radiation therapy.

I then had a CT with and without contrast. I don't recall having CT with contrast before. An IV was started. The CT without contrast was first and then and the contrast was administered for the second CT. I felt a warm and odd flushing that first centered in my pelvis and then went up to my neck. I became anxious with that feeling which I'm very familiar with and started to feel a little panicky. Then I reminded myself - oh, yes. This is the contrast. It went away quickly. The radiation oncologist and the physicist who has the training to work with radiation application sat behind a window in the same room. The purpose as I understood it of the CT was to examine my organs in the pelvic area to decide on exactly where the radiation would be targeted. It was also done so that everyone involved in my radiation therapy would know the location of my organs inside my pelvic area. After those measurements were taken with the CT, a staff member put little tiny tattoos in three places on me. One is on my belly just below my belly button and the other two are a few inches on my sides just below the hips. These felt like tiny pin pricks when they were done. The purpose of the tattoos would be for the radiation therapists to get the precise and exact location for each and every external radiation treatment. In order to make those little tattoos more visible to the eye, the first time I came to radiation therapy the tech used a black sharpie to draw little marks that made the areas on both of my sides more visible to them. They did this when the sharpie marks disappeared over time too as I had 25 external radiation treatments.

My next post will describe what happened when I started the actual external radiation therapy. started.

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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.

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I will. And thank you so much for sharing!!

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@rainyp

Good Morning- Thank you for this ! I met virtually with the Radiation team on Thursday and this is exactly the treatmnet they have planned out for me , with the addition of one day of Chemotherapy each week. I should hear Monday for the start date. They were very upfront and detailed with the process but hearing it from peers is so much appreciated. TY

Jump to this post

I will post more on my experiences in external radiation therapy (pelvis) and then another post for brachytherapy (internal radiation therapy).

All my best wishes and positive energy to you, @rainyp. Will you let me know the date you get your start date?

REPLY

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.

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Good Morning- Thank you for this ! I met virtually with the Radiation team on Thursday and this is exactly the treatmnet they have planned out for me , with the addition of one day of Chemotherapy each week. I should hear Monday for the start date. They were very upfront and detailed with the process but hearing it from peers is so much appreciated. TY

REPLY

The beginning of my pelvic radiation therapy journey was the CT simulation. The staff first took me to a dressing room where I changed into a gown that tied in the back. She explained to me that each time I came for radiation therapy I would be changing in a similar room in a designated suite of rooms. The changing room has a lock and the key can be worn around the wrist.

I was then accompanied to the CT simulation room. First, they made a sort of "cradle" for my legs. This was a casting that was made while I laid on my back. The purpose is that every time I came to radiation therapy my cast would be on the table and I could then lie in the exact same position. That cast was marked with my name and eventually placed in the room to make it available every day I arrived for radiation therapy.

I then had a CT with and without contrast. I don't recall having CT with contrast before. An IV was started. The CT without contrast was first and then and the contrast was administered for the second CT. I felt a warm and odd flushing that first centered in my pelvis and then went up to my neck. I became anxious with that feeling which I'm very familiar with and started to feel a little panicky. Then I reminded myself - oh, yes. This is the contrast. It went away quickly. The radiation oncologist and the physicist who has the training to work with radiation application sat behind a window in the same room. The purpose as I understood it of the CT was to examine my organs in the pelvic area to decide on exactly where the radiation would be targeted. It was also done so that everyone involved in my radiation therapy would know the location of my organs inside my pelvic area. After those measurements were taken with the CT, a staff member put little tiny tattoos in three places on me. One is on my belly just below my belly button and the other two are a few inches on my sides just below the hips. These felt like tiny pin pricks when they were done. The purpose of the tattoos would be for the radiation therapists to get the precise and exact location for each and every external radiation treatment. In order to make those little tattoos more visible to the eye, the first time I came to radiation therapy the tech used a black sharpie to draw little marks that made the areas on both of my sides more visible to them. They did this when the sharpie marks disappeared over time too as I had 25 external radiation treatments.

My next post will describe what happened when I started the actual external radiation therapy. started.

REPLY
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