Gee Katherine.i'd maybe get another path opinion on that and urological one for that matter.
In bladder cancer, pelvic lymph node dissection (PLND) is performed at the time of a radical cystectomy or a partial cystectomy. For these patients, PLND provides staging information and can be therapeutic. Several studies, including by Skinner[1] and Vieweg et al,[2] have confirmed that patients with pelvic lymph node metastases can be cured with PLND during radical cystectomy. However, the curability seemed to hold for organ-confined cancer (pathologic T stage 2) but not for non–organ-confined cancer (pathologic T stage 3).
Maybe send a copy of your CT scan to Hopkins for a second opinion
pathology.jhu.edu/department/services/consults/urologic.cfm
So many people are found to have involved lymph nodes at the time of cystectomy and often removal and adjuvant therapy is curative.
And maybe the combo neo-adjuvant chemo you are going to go through will work?
I know you must be devastated but if it were me i'd be going for that second opinion.
pat