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What Kind of Radiation Did You Get for Your Gynecological Cancer?
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.
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@zhangh73. Who are you addressing your question to? It looks like you are replying to @dlgbb. Is that correct?
@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.
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1 Reaction@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!
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1 Reaction@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.
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1 Reaction@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.
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1 ReactionIs there side effect after you brachy radiation? How long have you be NED? I was diagnosed with Grade 1, Stage 1A, with MSH6 deletion lynch symdromes, I only did surgery, have not done anything else. I think about brachy, but it seems not recommended by 3 oncologists and 2 radition oncologists. Thanks.
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1 Reaction@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.
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2 ReactionsThank you so much. I am Grade 1, Stage 1A with MSH6 deletion, p53 wild type. Doctor suggested close monitor it, chat GDP suggested close monitor or brachy therapy. Currently I decided not to do brachy therapy, but still feel a lot worry for the recurrence. Will test pole mutation after I consult with oncologist. Thank you!
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1 Reaction@dlgbb Hello, Diana.
Oh, those photos show such gorgeous views. Yes, I recall Canmore from the 1988 Winter Olympics. I was living in North Dakota in 1988 and Canmore did not seem all that far away. I would love to make the trip. When I do I will surely let you know! Thank you.