Nancy, I am very sorry this has to be terrible not knowing what is going on. The reason you are not getting many replies is that we do not see a lot of this here. It sometimes happens after an RC but it has been a while since someone here had this happen. We really can not answer your question because we are not medical professionals. Everyones situation is unique and there are many facts that would factor in, such as age, general health or other complicating conditions. Your health care professionals are the only ones who can help you find the answers you are seeking and if they are taking a wait and see stance they may not have the answers you seek yet.
What we do offer here is a caring ear and thoughts we have gained through experience. Have you talked to your husbands doctors and told them that you need more information than you have been given? What are they saying? Keep us updated and we will be here for you.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society