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.

@val64

@terradean. That sounds very stressful to be getting confusing information from different directions like that. Have you tried looking at the pathology reports for your hysteroscopy and hysterectomy specimens in the hospital's patient portal? Those reports should state directly what the oncologists are looking at to make their treatment decisions. Some things to look for are
1) the type of cancer and Grade. On my pathology reports, this is near the top under "Final Diagnosis". Mine says "Endometrial adenocarcinoma endometrioid type FIGO Grade 3." Grade is an indication of how much the cells in the tumor look like normal endometrial cells under the microscope. Grade 1 means they look pretty similar to normal cells, which usually means the cancer is less aggressive. Grade 3 means they don't look much at all like normal cells, which usually means the cancer is more aggressive. There can also be different types of cells such as "serous" or "clear cell", which is a different from "endometrioid". These other types are all Grade 3.

2) the Stage. On my report this is closer to the bottom under "Synoptic Report". Mine is "FIGO Stage (2018 FIGO Cancer Report): IB: Invasion equal to or more than half
of the myometrium." The stage is an indication of how much the cancer has spread. From your description, it sounds like yours is IIIA, which the American Cancer Society website defines as "The cancer has spread to the outer surface of the uterus (called the serosa) and/or to the fallopian tubes or ovaries (the adnexa) (T3a)."

You can also look at "Lymphovascular Invasion" which is also under the "Synoptic Report" on my report and the "immunohistochemical stains" for "p53", which will be reported as positive or negative. Lymphovascular invasion means that the cancer has entered the system that carries lymph fluid. Mine was positive. p53 is a gene that when mutated (reported as "positive" on the pathology report) is associated with more aggressive cancers. Mine was positive for this too.

The oncologists use these things to determine the level of risk that the cancer has spread, even though they can't detect any tumors elsewhere in your body or in your lymph nodes. Cancer cells may be lurking somewhere and will grow into tumors later if they aren't killed with chemo and radiation now. You should ask your doctors, but your Stage IIIA is probably the main reason for the aggressive treatment plan.

I'm having chemo and vaginal brachytherapy, even though my lymph nodes were negative and I don't have any known tumors after the hysterectomy, because I have a trifecta of high grade (Grade 3), greater than 50% myometrial invasion, positive for lymphovascular invasion, and positive for p53.

I've had two rounds of chemo so far and have found it tolerable. On the day of the infusion and for two days afterwards I have felt pretty good, and would have been able to work my desk job if I hadn't already quit. (This is probably because of all the other drugs they infuse like steroids and anti-nausea meds). I'm not sure about a job on your feet. The next 2-3 days I felt very tired, was uninterested in eating, and would not have been much good at work. But after that I felt fine again. Something about the chemo gives me brutal constipation, and I'm still trying to figure out how to use Miralax properly. My hair started falling out after 2 weeks, and now at almost 5 weeks, it is very thin with lots of scalp showing through. I'm looking forward to this being over.

Good luck to you.

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@val64 Thank you for your excellent description and explanation. It's a guide for any of us trying to read and understand their pathology report.

It sounds like you are tolerating the chemotherapy pretty well other than the terrible constipation. I hope you continue on this path so that you have just a few days in-between when you are fatigued and don't have an appetite. I can imagine that you are looking to the future when the chemo will be finished.

What is your treatment plan? Will there be any other treatment after you finish chemotherapy?

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@naturegirl5

@val64 Thank you for your excellent description and explanation. It's a guide for any of us trying to read and understand their pathology report.

It sounds like you are tolerating the chemotherapy pretty well other than the terrible constipation. I hope you continue on this path so that you have just a few days in-between when you are fatigued and don't have an appetite. I can imagine that you are looking to the future when the chemo will be finished.

What is your treatment plan? Will there be any other treatment after you finish chemotherapy?

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I'm having vaginal brachytherapy now (3 treatments, 1 week apart). So when the chemo is finally over in January, I'll be finished as long as everything looks OK.

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Vaginal Brachytherapy treatment
Hi
Had my first treatment of 3, started the first one Monday and go today for my 2nd one and have the last one Friday then all done , just go back for periodically for treatment. I am getting 15 minutes of Radiation and time they get you set up it takes all together close to a hour. There is a little discomfort when finding which size of tool they need . They try 3 different sizes so when they find the correct one they take that out and insert the same size one that gives you the radiation. Then they hook up wires to the tool they use then start the radiation on a timer, it shuts off when done. Then Doc comes in removes the tool and wires you are all done. You do have to have legs in stirrups and I had to have CT Scan where they put me though it 3 times then they hook the wires up to the tool and then radiation begins.

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@cheriels

Vaginal Brachytherapy treatment
Hi
Had my first treatment of 3, started the first one Monday and go today for my 2nd one and have the last one Friday then all done , just go back for periodically for treatment. I am getting 15 minutes of Radiation and time they get you set up it takes all together close to a hour. There is a little discomfort when finding which size of tool they need . They try 3 different sizes so when they find the correct one they take that out and insert the same size one that gives you the radiation. Then they hook up wires to the tool they use then start the radiation on a timer, it shuts off when done. Then Doc comes in removes the tool and wires you are all done. You do have to have legs in stirrups and I had to have CT Scan where they put me though it 3 times then they hook the wires up to the tool and then radiation begins.

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@cheriels I'm confident that members who are soon to have vaginal brachytherapy will be very grateful to have your explanation of how it went for you. Since vaginal brachytherapy is a kind of radiation therapy your post was moved to this existing discussion on radiation treatment for gynecological cancers.

- What Kind of Radiation Did You Get for Your Gynecological Cancer? https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/
We did this to help you connect more easily with other members who are sharing their experiences with different types of radiation and with women who are seeking information before starting radiation.

Cheriel, now that you've had 3 treatments, is there anything you wish you had known or tips you'd offer to anyone getting vaginal brachytherapy?

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@naturegirl5

@cheriels I'm confident that members who are soon to have vaginal brachytherapy will be very grateful to have your explanation of how it went for you. Since vaginal brachytherapy is a kind of radiation therapy your post was moved to this existing discussion on radiation treatment for gynecological cancers.

- What Kind of Radiation Did You Get for Your Gynecological Cancer? https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/
We did this to help you connect more easily with other members who are sharing their experiences with different types of radiation and with women who are seeking information before starting radiation.

Cheriel, now that you've had 3 treatments, is there anything you wish you had known or tips you'd offer to anyone getting vaginal brachytherapy?

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Hi
Just having my 2nd treatment today, the last one on Friday! The tips I have is try to be relaxed , if you get all
nervous you get your body will tense up which you don’t want. The Doctor and her helpers are well trained and the make it as comfortable as they can, which they did for me. You will feel little discomfort when the insert the first tools to find out which one your body needs, but if you can relax you hardly feel any discomfort and they will ask you how you are doing when getting you prepped. Before you know it they start radiation and your done!

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@naturegirl5

@cheriels I'm confident that members who are soon to have vaginal brachytherapy will be very grateful to have your explanation of how it went for you. Since vaginal brachytherapy is a kind of radiation therapy your post was moved to this existing discussion on radiation treatment for gynecological cancers.

- What Kind of Radiation Did You Get for Your Gynecological Cancer? https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/
We did this to help you connect more easily with other members who are sharing their experiences with different types of radiation and with women who are seeking information before starting radiation.

Cheriel, now that you've had 3 treatments, is there anything you wish you had known or tips you'd offer to anyone getting vaginal brachytherapy?

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Hi it’s ok to post it here.

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@cheriels

Vaginal Brachytherapy treatment
Hi
Had my first treatment of 3, started the first one Monday and go today for my 2nd one and have the last one Friday then all done , just go back for periodically for treatment. I am getting 15 minutes of Radiation and time they get you set up it takes all together close to a hour. There is a little discomfort when finding which size of tool they need . They try 3 different sizes so when they find the correct one they take that out and insert the same size one that gives you the radiation. Then they hook up wires to the tool they use then start the radiation on a timer, it shuts off when done. Then Doc comes in removes the tool and wires you are all done. You do have to have legs in stirrups and I had to have CT Scan where they put me though it 3 times then they hook the wires up to the tool and then radiation begins.

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Interesting, Im scheduled for 2 vaginal brachytherapy and was told mine were to be done under sedation. How did you feel afterwards?

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@rainyp

Interesting, Im scheduled for 2 vaginal brachytherapy and was told mine were to be done under sedation. How did you feel afterwards?

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Hi
I had no problems! Legs were little sore from being put up in the stir-ups and spread, but other than that , no other problems. There was no mention of sedation to me , but I am fine without it. Hope this helps you.

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@terradean

Their revision on 9/12/22 states FIGO1, however 100% Myometrial Invasion, Uterine Serosa involvement: present, Pertinoneal / Ascitic fluid: Present No lymph, no ovary, no tube involvement
PATHOLOGIC STAGE: pt3A
Endometrial adenocarcinoma, G1-2, at serosa full invasion
I think at this point will just ask alot more questions, but seems I get the max, because malignant cells in peritoneal area wash from lesions on serosa. And, could be going everywhere in my body to spread, so my body will be punished fully now with max treatment right away

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Monday was first day of chemo, was fine and next day ok, however, Wednesday woke up pain I think in bones, knees, legs feet, arms. In afternoon got tummy cramps till got everything out of me. Tylenol not doing much. Dr. office called this afternoon told me to try NASID's occasionally to help.
Hasn't affected my taste buds nor my appetite, but going to do softer foods after tummy issue.
Be more careful hope pain goes away soon. Not sure going to be worth much during chemo.

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I was diagnosed with vulvar cancer in 2018. Got into lymph nodes as well. So after healing from surgery I had 7 weeks of radiation 5 days a week simultaneously with chemo. I would drink my 16 oz bottles of water on the way to radiation. At first this was a little difficult holding that water till after treatment but the facility always took u right on time and I would jump off the table & race to the bathroom to relieve myself when session was over. As treatment went on my bladder got used to it. At the same time as the effects of radiation took its toll. You can’t use any creams before the session so I had everything in a cosmetic bag with me so I could use once I got in that rest room. I had RX creams for burns essentially. I also used at home Domboro powder. You mix it with warm water in a squeeze bottle and pour that over the skin as you sit on the potty. That was such a relief!!! I ordered through my medical pharmacy supply store by the cases.
For diarrhea I used alot of tucks soothing pads. I carried these with me in my cosmetic bag wherever I went. I would tuck one in between and let it rest there as well. I got through this better than I ever thought I would with the grace of God. It sounds scary but the Drs and staff were amazing !
I joined this group because I don’t know anyone who has been diagnosed with this cancer. If I can help anyone I can share my experience.

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