← Return to Recurrence of gynecological cancer

Discussion

Recurrence of gynecological cancer

Gynecologic Cancers | Last Active: Aug 8, 2023 | Replies (32)

Comment receiving replies
@naturegirl5

@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?

Jump to this post


Replies to "@cialonel I so understand why your head is spinning. That’s how I felt when my nurse..."

Thanks.. your reply is helpful and i do need to think forward and not focus on what might have been. I actually made plans today to go out to buy a notebook for questions and a journal. I feel like I will advocate better now...lesson learned. It frustrates me that because statistically 1a doesn't require more thorough exams, and that allows others to slip through the cracks. Maybe not an expensive scan but could a CA125 blood test have hinted something was going on before I was bleeding and the cancer was in the lymphatic system? And I think about all the people who can't advocate for themselves, understand what to look for or articulate what they need. Protocols based on statistics alone that are designed to reduce costs fail those all those people. Sorry for the rant. Still trying to get on top of what I'm feeling.