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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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Is 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
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 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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2 Reactions@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@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@zhangh73. Who are you addressing your question to? It looks like you are replying to @dlgbb. Is that correct?
May I ask you that how to get pole mutation, did you use germline test or tumor sample to test pole mutation. Did you get this results from Mayo clinics? thanks
@tdfraze Thank you for sharing what you have learned about the response to treatment given the POLE mutation. It sounds like you've had a very rough time over the past 6 months and now these health conditions are addressed. It might be that the road ahead will have some rough spots and your faith will provide you with the inspiration and hope that is needed.
Do you have family and friends who are supporting you through surgeries and treatments?
@dlgbb I did notice the jersey but wasn't sure where it was from. How exciting and rewarding to wear it as you finished treatment and rang the gong and the chimes. Congratulations to the Medicine Hat Tigers and hope they do mke their way to the Memorial Cup.
I know how you feel about the care received. I felt the same at Mayo Clinic in Rochester, Minnesota when I finished. I've never visited the Arthur J E Childs Comprehensive Centre and with all your descriptions of Calgary I want to visit. I've never been that far north in Alberta.
There are so many beautiful places to visit in North America that I'm very happy to stay right here and not go overseas. X-country skiing in the Canadian Rockies is on my bucket list.
@dlgbb I'm very happy to hear that you back home and are feeling your energy return. I imagine that fatigue will take a little time to go away. In the meantime, it does sound like you are listening to your body, as we say, and taking the time needed to recovery. I also found that exercise, especially walking, was helpful during radiation therapy and after I returned home.
I will certainly tag you as you are now in expert in surgery and radiation therapy. Isn't it amazing what we can endure during a time when we think we do not have the strength?
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