7 years 4 months ago - 7 years 4 months ago#41176by Cynthia
Sorry you have to be here but welcome to our community. Having people you say what you think to as you go through this who understand is a great help. We don't always have the answers but we will listen and be here.
It sounds like you are on the right track Barnes has a good bladder cancer reputation. As for the number of surgeries they do a year your right it is important. I am also impressed that your original uro said lets get someone who does more of these. Having trust in your medical team is a gift in our situation.
Remember a lot of us have been through this and got to the other side. It is not easy but it is doable. I have had an Radical Cystectomy and have an Indiana Pouch done in 06 it works well. I snorkel, swim, walk and dance,I can't play tennis but I never could.
Here is a link to a glossary of bladder cancer terms it may help.
I spent last weekend readings all of the forums/threads/posts etc on here while I waited on my biopsy results from a removed tumor last week. My first URO missed the tumor during the scope procedure. I don't know all the abbreviations and medical terms yet but after reading so much on here I was so much better educated when my doctor called yesterday.
I am 53 years young, married to a wonderful woman and she's an RN, and I have 3 great sons. A 21 year old from a previous marriage who is going to Texas A&M who I am so proud of, a 10 year old who is just like me, and a 9 year old who is Autistic & Type 1 diabetic. We live in Southern Illinois and I'm retired naval officer but I am on my second career now. Our life was/is full of challenges and rewards. Yesterday the game changed when my doctor called.
I have invasive BC T-2 - T-3. My doctor is part of the URO team at Barnes Jewish Hospital / Siteman's in St. Louis, MO. He is recommending RC with neobladder. Today he is consulting with others about possible chemo now or wait until post OP. He does 10 neo's a year presently. He is well known for robotic kidney and prostate surgery. He is referring me to another team member who does roughly 50 neo's a year but he will assist during surgery. I give him a lot of credit for taking the back seat. So again today I am waiting on the next plan, chemo or surgery.
So here I am and I will need you guys as I take the journey. I will update my status when I know more. Right now I am trying to get over the shock of the phone call yesterday and telling our kids and family members. I struggled all last weekend about joining the group but in the back of my mind I knew I would be. I joined today. Thanks