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Endometrial cancer at a late age
Gynecologic Cancers | Last Active: Dec 3 7:06pm | Replies (67)Comment receiving replies
My cancer was found during a routine pap smear..very unusual to find uterine cancer this way...it was very early and was just a spec on wall of the uterus ....all lymph nodes were clear no cancer anywhere but this tiny spec....no spread...I asked about chemo and was told that it wasn't called .for..I did have 3 rounds of radiation lasting 4 minutes each as a precaution . I was cancer free for 18 months and then it recurred, I had chemo, lost all my hair ( had a fabulous wig ) tolerated it well and at the end of the 6 rounds I was again NED ( no evidence of disease )....that also lasted for about 18 months and as my CA 125 creeped up past the normal range ( 77) I had a PET scan that shed very early node activity...I started enhertu in May of this year and have infusions ( 30 min ) every 4 weeks.. my last PET scan which was Saturday 11-8 I am again NED...Enhertu side effects are milder that the other chemo...still unpleasant but manageable.....happy there is a drug that is working for me and hopefully will continue to keep the cancer at bay for a long long time ! and you're correct about that one rogue cell!! I think they are always there just need to keep them quiet !! BTW I know no one with this kind of rare agressive cancer. If you want to share stories I would be happy to do sp privately...not sure how that's done. Where are you being treated ?
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@alohman08 hi, 69 yr old flight attendant here, diagnosed with endometrial carcinosarcoma in early September this year after excessive bleeding. Stage 1A, had hysterectomy at Dana Farber in Boston. I recently moved to Jacksonville to continue treatment at Mayo and be near family. I had 2nd of 6 chemo (carbotaxol) and am doing well. The Radiologist gave me the choice of brachytherapy or radiation post chemo, but stated that only radiation beam addresses the lymph nodes whereas BT only addressed the actually area around where the former tumor was so I chose the beam radiation. So this is all still new and shocking, hard to constantly hear and read “because of your very aggressive type of cancer” with this diagnosis but encouraging to hear about 12 year+ survivors…so let’s plan on that route! If you’d like to text privately I’m all in!
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@alohman08 Do you mind sharing what your CA125 was at the time you were first diagnosed?