Newbie Checking In

12 years 3 weeks ago - 12 years 3 weeks ago #41176 by Cynthia
Replied by Cynthia on topic Newbie Checking In
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.

bladdercancersupport.org/bladder-cancer-help/resources/glossary-of-terms

Remember we are here 24/7.

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

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12 years 4 weeks ago #41174 by MyChoice
Newbie Checking In was created by MyChoice
Hi All,

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

PC 7/2/12
T3a/N2/M0

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