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Recurrence of gynecological cancer
Gynecologic Cancers | Last Active: Aug 8, 2023 | Replies (32)Comment receiving replies
I had a total hysterectomy in Jan 2022 and staged at 1a. No treatment, just follow ups every 3 months. Follow ups are quick exams, no scans. I jus had a follow up June 1 all clear. 2 weeks later I started bleeding. CT scan showed mass in pelvis and 2 pelvic lymph nodes. It's 6 weeks since my 'all clear' exam and I'm starting chemo next week. My head is spinning. How did this happen so quickly? Was something missed at the check up? I feel like I need to be better prepared this time around but I don't know what I should be asking for or advocating for to make sure I'm getting the right treatment.
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Yikes! I had a total hysterectomy this March, stage 1a, also. I just had my first oncology checkup yesterday, very quick.. No chemo or radiation. Keep posting on your progress. I understand why your head would be spinning.
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@cialonel I so understand why your head is spinning. That’s how I felt when my nurse practitioner called to tell me that the biopsy on the little growth she found on my vaginal cuff was a recurrence of endometrial cancer. After my radical hysterectomy in 2019 I asked the GYNOncologist about follow-up exams and what these would include. She said I would return every 6 months for a pelvic exam. I asked about CT scans and she told me that recurrence of my cancer (endometrioid adenocarcinoma, Grade 1, Stage 1a) most commonly shows up at the vaginal cuff and a CT scan wasn’t called for unless something showed up on the physical exam. And for me, that’s exactly what happened.
If I had the “all clear” exam that you did and a few weeks later developed bleeding, I’d be asking myself the same questions that you are. What was missed? Was there nothing that showed up on the physical exam? Did your doctor tell you that this is a recurrence of the cancer you were diagnosed with last year? I too wondered if something was missed by pathology when my specimen was examined after my hysterectomy. But wondering and worrying about that did not help me handle my present situation other than cause more anxiety and worry. So, I decided to write my questions as they occurred to me, organize my list, and ask those questions when I saw my doctor. Did I advocate for myself? Yes, I think I did the best I could at the time. I also realized that my nurse practitioner advocated for me by consulting with the GYNOncologists in her department and that it was this collaborative model that offered me more confidence as I went into treatment (radiation therapy) for the recurrence.
Have you started a binder with all of your medical information related to the cancer? Will you start writing questions for your doctors and add these to your binder with their answers?