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Newly Diagnosed: FIGO 2 Uterine Cancer: What does this mean?

Gynecologic Cancers | Last Active: Jun 2, 2023 | Replies (61)
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@oregonrain7

Last year I was treated for endometrial cancer - grade 3, clear cell. Fortunately, it was stage 1A. I too was told the there was a possibility of Lynch Syndrome. Because of the clear cell diagnosis, I had chemotherapy which completed in November. In December I had 3 brachytherapy treatments. I had no issues with the treatment. There was almost no pain plus I have had few issues since. My radiologist was very careful about ensuring that my rectum and bladder were not radiated. This treatment was much easier than external radiation.

As for the Lynch Syndrome, I have been working with a geneticist to determine if this is inherited (versus acquired). I have two genes with variants of unknown significance that have been associated with Lynch. This is not enough to prove Lynch. Two of my first cousins have provided their genetic test results. They do not have these variants. I am interested how your medical team is handling the possibility of Lynch.

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gratefulcat | @gratefulcat | Mar 31, 2023

Hi Oregonrain7 -

Thank you so much for sharing your story with me. This information is very helpful. Were you notified of any long-term side effects when you went through your brachytherapy? Did you have a positive pelvic washing? They are recommending I have 4 treatments which feels so radical, and I am trying to make my decision with as much information as possible. The treatment is all in the numbers, as they say. Currently, I have a 12% chance or recurrence, and with brachytherapy, it's reduced to 3% so I would do the treatment if I felt confident it wouldn't create more complicated issues down the road.

I also have been working with a genetic counselor to find out if I have Lynch since I also have two of the genetic markers. My family members did not provide their genetic information; we only went through my family history. If I am diagnosed with Lynch, I would need to coordinate all future care through a Lynch specialist/coordinator whom we have here at our local hospital.

I wish you the very best in your journey and will keep you in my thoughts.

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