Sorry we had to meet under these circumstances, but welcome here. Upper tract TCC is not common, I think the stats say something like 5% of diagnoses, but there are a few people active on the forum who have had it or care about someone who does. There are quite a few folks active on the email list who have been through it all, too.
Surgery is the most often road traveled, like your husband's doctor already said. I know a bunch of folks who have been there and are doing fine. The size of your husband's tumor doesn't sound overly large, it may well be contained with the urinary tract, and that is the most important thing at this time.
Your husband is probably right, that it won't help much to scour the internet, and it's a sign of your love that you're the one out here doing it, I know how terrifying it all is in the beginning of such a journey. I've been both caregiver and patient, straddled the fence so to speak, and I think cancer is harder for the caregiver than going through it yourself. You sound very strong, but I know the stress of this all takes a huge toll so please be careful and take care of yourself as well.
Maybe there is something to be said about waiting for a written diagnosis before looking for info...but there's also something to be said for having some knowledge about all the possible options as well.
We have a section for those with upper tract TCC, to help make it easier to connect, so once you have a firm dx, maybe it would be a good idea to post in that section.
Please keep in touch, and I wish you nothing but the best with this all>
My Grandmother often used this term "A long row to hoe " when hard times were ahead. I felt like this would be appropriate for what my husband (age 58) and I are facing. He had a CT scan which revealed a 5 cm. growth on the left side of his bladder that extends 2.5 cm into his ureter. The radiologist report listed it as likely TCC. We went to the Urologist on Tuesday of this week and have been scheduled for a peek and poke on the 20th.
This website has been a comfort to me as I have read the posts of those who are dealing with the procedures and the loved ones of those who are trying to cope. I have read everything that I can get my hands on and find on the internet. I want to be completley informed as we start this journey. My husband is apprehensive and wants to wait until we have it in writing. I think that this is normal and I want to be as supportive as possible. I also want to be prepared for all the possiblities that arise. I find myself having to be strong for him, our children and our family.
My concern is the growth into the ureter. We have been advised that if the test is positive for TCC, they may have to take the bladder, ureter and the kidney, however, all of this will be discussed after the pathology report. I an anxious to hear from those of you who may have had a growth that extended into the ureter. I don't know if this is rare since I am having trouble finding case histories that list information involving the ureter.
Thank you for your courage and your willingness to share your feelings and knowledge. I know that this will help us as all of the events unfold in the next few weeks. I do know that the things that were important to me last week are totally insignificant this week.
Again, thank you from the bottom of my heart.
"What lies behind us or what lies before us are tiny matters, compared to what lies within us." Ralph Waldo Emerson