Lynn,
I was diagnosed with high grade TCC deep muscle invasion (T2 but the doctors actually thought it was T3 until my surgery), the CT scan prior to my TURBT showed three enlarged lymph nodes(one was largest the other two only slightly enlarged). After other testing I made the choice of having my lymph nodes checked laproscopically and if they were negative for cancer they would proceed with the cystectomy. Then they checked the other organs for cancer, all frozen sections were negative (I had a complete hysterectomy at the same time which is normal for a female of my age -- 55 in 2/2004). Once all tests were negative they proceeded on and made me a new bladder from ileum and hooked it up to my own plumbing (urethra--which they also thought might be involved because of the location of one of my two tumors).
I have had all the usual follow-up tests since that time, it's now been two years and nine months to the day (2-17-2004) since my surgery and I have no evidence of disease. In addition to all I have written I want you to know that I have not had chemotherapy of any kind, not before or after or since my surgery. I'm quite happy with the decision I made, and for me at least for now it's been the right decision. I know there are others on this site that can tell you very similar stories to mine, with pretty much the same results. I hope this will be of some help to you and your husband, just remember it's the doctor and the patient who make the decision. But most of all it's the patient's decision that is most important, and that comes from being very thoroughly informed of all aspects of the disease and also the possibilities for treatment and their outcomes.
I'll have you both in my thoughts during this time of decision making for both of you, and I'll keep you in my prayers as well.
Lou Graham
RC/ ileal orthotopic neobladder 2/2004
University of Alabama at Birmingham Hospital