Feb 27, 2014 - 12:50 pm
Hi everyone. So glad to have found this forum. I just turned 46 and had a complete abdominal hysterectomy two week ago today, to remove a large benign tumor and a fibroid. Unfortunately, some very rare clear cell endometrial cancer was found. The surgeon explained that she removed everything that she saw, and did some poking around with an Urologist, and they did not see any other abnormalities. I am healling very well from the hysterectomy, but I was referred to a gyn oncologist to discuss what was removed. Two day ago I had my appointment and was told immediately that I need 18 weeks of chemo. Th cancer was classified as stage 1b, I think, but the specialist, who did not perform the surgery, is classifying it as stage 2b, if I'm not mistaken. I will need to have the completion surgery after third cycle of chemo, and then continue with the chemo afterwards. I was shocked to hear all of this so the exact stages may not be accurate, but it was definately stage 1 or 2.
I am really confused over a few things. First, I have no proof that the cancer that was removed has spread. There were no additional scans or tests done. Secondly, I don't understand how pathology can stage something and another doctor can upgrade the stage. And I can't have the staging surgery, where lymph nodes are checked, until after the third cycle of chemo. I feel like the staging surgery should be first, but I'm not a doctor, obviously.
Has anyone else had an experience like this? I don't understand why they are recommending chemo immediately for cancer that was removed during they hysterectomy. And I also don't understand how another doctor can just upgrade the stage. It was almost like she is assuming the cancer has spread, without doing any additional tests. Is it just precutionary? To put it simply, I kind of want the proof that there are remaining cancer cells in my body before I embark on 18 weeks of chemo.
Any opinions or insight to this would be much appreciated. This all happened so fast and my husband and I are very concerned and confusted. I am scheduled to have the port implanted tomorrow, but I have a consult with another doctor next Friday.
Please and thank you,
Jane --Confused and Terrified in Florida