Newly diagnosed and scared!
I’ve been struggling a lot with the intersection of my diagnosis, my mutation, and being a Black woman.
I was recently diagnosed with FIGO grade 1 endometrioid endometrial adenocarcinoma, and my molecular testing showed a pathogenic TP53 mutation (p53-mutant). I know that doesn’t automatically tell me my stage or mean that my cancer has spread, but I’ve read enough to understand that p53-mutant endometrial cancers can be more concerning, and that Black women unfortunately experience worse outcomes with endometrial cancer overall.
What has been especially difficult for me is looking back and realizing that I had symptoms for a long time—particularly prolonged/abnormal bleeding—and wondering whether I was diagnosed later than I should have been.
I had fibroids and other gynecologic issues, so for a long time there were explanations for what I was experiencing. But now that I have a cancer diagnosis, I can't help but wonder: Was my body trying to tell me something much earlier? Did I wait too long?
And being a Black woman makes that question even heavier. We know there are real racial disparities in endometrial cancer, including differences in diagnosis, treatment, and outcomes. It is painful to think about whether my experience is part of that bigger problem.
I'm trying so hard not to Google myself into the worst possible outcome. I don't know my final stage yet. I don't know what my surgical pathology will show. I don't know what treatment I'll need beyond surgery.
I’m scared, angry, hopeful, and overwhelmed all at the same time.
For anyone who has had p53-mutant endometrial cancer, especially Black women who also had symptoms for a long time before diagnosis:
How did you handle the waiting? Did you feel like you were diagnosed too late? What did your final pathology show, and did the p53 mutation change your treatment plan?
I would really appreciate hearing from people who have actually walked this road. ❤️