Thanks for the sites. I since have found out that she has to stay within the Kaiser system. Sorry about the troubllle you went to. They have scared her so much with all the things that can go wrong with the neo that she is considering the external bag. I'm going to write a new question from people who have the external. I just remembered that a dr. friend of mine is a urologist so I'm calling him tonight and pumping him with questions. Dorinda was diagnosed with bladder cancer probably 2 years ago and has been having 3 different treatments where they pump stuff into her bladder. About a month ago they went in and found the invasive type and said she would have to have it removed. I don't know what TURB means so I can't answer that question. Thanks again for your help. I can't tell you how much it means to us. Love, Barb;)
Barbara...what did her pathology report say..do you know? How long has it been since diagnosis? You do have some time...especially for second opinions. Has she had one TURB or two?
One of the top facilities is USC/Norris.....2 doctors there not related but having the same name.....both listed in Best Doctors in the US......Eila Skinner www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1090
And Donald Skinner head of Urology at USC/Norris www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1088
Dr. Wilson at City of Hope i believe is more into prostate surgery but there is a doctor there who trained under the great Dr. John Stein at USC/Norris www.cityofhope.org/directory/people/josephson-david/Pages/default.aspx
Dr. Josephson.
Many specialists in the bladder cancer world generally treat Men...thats just the way it is...they are very successful with doing neobladders with men as they have a long urethra. An Indiana Pouch is a more complicated surgery and truthfully they just haven't learned how to do it.
Pat
I don't know. I'll try to find out tomorrow. At least se found out that this doctor that doesn't do Indiana does about 50 others a year. Thanks so much for your help. Barbara
Can your sister go outside of the Kaiser system? I'm in the SF bay area and had Dr. Konety (@ UCSF) do the surgery. He was wonderful. But thats pretty far for you. I have heard a lot of good things about UC Norris in LA.
Also City of Hope is close to San Diego I believe (in
Duarte, CA). I had a referral to Doctor Tim Wilson who I believe may also do this surgery laproscopically. The nurse that does his scheduling is Patty (626-301-8917). I do not know more about Dr. Wilson then this since I never followed up with him. But you could certainly call to find out his level of experience with the surgery, referrals and so forth.
I hope Patricia is listening and can give you the names of the doctors @ UC Norris. The names escape me right now although both have the same last name.
Whats important is if she can go outside of the Kaiser system?
Thank you for your response. She just got home from seeing the surgeon and he says he doesn't do the Indiana. Now I'm so scared that he doesn't have enough experience. She forgot to ask him how many of these he does a year. She lives in San Diego and goes to Kaiser. I want so much for her to get a second opinion from a specialist in SD but there isn't enough time. She is a wreck and I just don't know what to do. Does anyone out there know any way for her to get in to see a specialist in San Diego? She is so scared it will spread if she waits for a second opinion. I'm sorry but I'm a wreck too. Thanks so much for your kind words. I read it to her and she said "there sure are a lot of kind people out there" Thanks again, Barbara
I had an RC on May 23, 2008. Making the decision to go for a neo or an Indiana Pouch was a huge decision. I couldn't have made it without a couple of the gals on this site( hi Patricia & Melodie). I was (and am)confident that the Indiana pouch was the right decision for me. It was also recommended by two other doctors I consulted with (although my doctor preferred the neo) and their reason was incontinence in women. With the neo I understand that one often has to wear a diaper or some sort of protection at night - with an Indy that is not the case (at least with me). But one has to cath and there is no way around that. I am early in the program and like Webs I'm going through chemo now. I have to tell you that the surgery was so much easier for me then this chemo. At least during that recovery from surgery I felt somewhat better each day. The chemotherapy is just the opposite. But I just need to get through this too.
I was terrified before the surgery. Being a worrier by nature I thought of everything that could go wrong. None of those things (thankfully) happened. I would encourage your sister to ask her doc about pain management. I had an epidural for 5 days after and it made a world of difference. I also felt confident in my choice of doctor. You will see the experience factor of the doctor stressed over and over on this site. It is important.
There is no doubt that this is a life altering event. But your sister already has shown her true grit on (too) many occasions. None of us wanted to make this decision but its easy when life is the option you choose. Please tell your sister that she has many friends here that will help her, support her, laugh with her and cry with her. Please let us know how we can help.
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