Did you have any scans (pet,mri, etc.) prior to surgery? The staging is done clinically, meaning that they dont usually change it. I was dx with 1b1 after a negative Pap smear and negative ultrasound. The gyn did a hysteroscopy/d&c for what he thought was a bleeding polyp which came back with squamous cell but no tumor was visible to the gyn. They scheduled me for a radical hysterectomy on 3/18/15 which was abandoned when the surgeon found 3 suspect lymph nodes ( he removed them and as many others as he could find robotically). They came back as cancer (the three nodes). A subsequent pet scan showed nodes in the para-aortic area somewhat enlarged and suspect. I finally started radiation/ chemo last week after I'd healed enough. I was frustrated by the low index of suspicion on the part of the onc gyn and his continued reassurances that everything was fine and "it would be taken care of by the D&C," and then, "it would be completely treated by the rad hyst." He never mentioned he would abandon the surgery for any reason, and although I certainly knew they might appreciate more cancer after getting the path report, I was stunned to wake up to still having my lady parts.
So I'm still staged as a 1b1 n1, but being treated very aggressively (25 radiation with 6 cisplatin chemos, then brachtherapy as inpatient with package placed in surgery and left in place for 3 days, and then the whole run of adjuvant chemo.
All anxiety or and sleep meds have had huge side effects so I'm, well, trying to cope, but not managing too graciously. I definitely would have preferred to start treatment sooner, to not have had to go through that awful bowel prep, the pain and side effects of the surgery (numbness, swelling, scarring, adhesions, copays). I asked the gyn onc about having scans before surgery but was told I should "trust his experience."
I'm sad about the repeated horror /maiming/ assault to my body that is my life at this point. I'm scared I won't be able to stand it and the side effects, but don't want to let my family down. So I keep showing up every day and crying every night long after everyone has gone to sleep.