Thank you for your response. I was diagnosed with a leiomyosarcoma on my bladder in September of this year, Dr. Smith says that because of where it (at the neck of the bladder)he will have to do a RC, and because the urethra is involved he will be removing it so i will not be eligible for the neobladder He will be attempting a continent diversion sorta like the indiana pouch. I am blessed that this was found very early even though it is a high grade leiomyosarcoma it was caught so early they were not able to stage it and that it was less than 5cms. According to the CT there are no mets and Dr. Smith is fairly confident that once he removes the bladder all will be good. I was very pleased at my initial appt with Dr. Smith and his staff they were all very pleasant. He did not appear to be rushed and spent a great deal of time with us we found out from his nurse that he had 26 new visits that day he was going on vacation and did not want to put them off before he left. Again thank you for taking the time to respond to my post.
Someone at another forum asked if I would respond to your discussion. Dr. Smith has been my urologic oncologist since about Jan 2008. I was diagnosed with high grade urothelial ca of the bladder in late December of the preceding year and met Dr. Smith shortly thereafter. I also sought consultation at MD Anderson, but because of the closer proximity of Nashville to my home as well as my personal preference for Dr. Smith I opted to be treated at Vanderbilt. First of all, I found Dr. Smith to be a caring, competent physician who was an excellent communicator. I had many questions as our relationship developed and he always had plenty of time to address them completely without my ever feeling rushed. I have never been to an appointment with Dr. Smith that I did not leave feeling more comfortable and more confident with our plans. In March of 2008, I had a radical cystoprostatectomy with extended lymph node dissection and orthotopic neobladder. My surgery lasted about 3 hours and I was walking within 12 hours of surgery. Now 2.5 years later all is well, thus far I am cancer free, and all of the new equipment is working perfectly. I have had no complications and fairly quickly resumed a physically active life style. I exercise vigorously regularly and we have traveled quite a bit in the time since surgery. I was 59 at the time of my surgery and in fairly good condition. Post surgery I lost about 12-15 pounds, but fairly quickly regained that weight. Post op I had a foley catheter, ureteral stents (one for each ureter), and a Jackson-Pratt drain. In addition, there was an IV for administration of fluids, antibiotics and pain meds. You remain on IV fluid as your intake until the GI tract reawakens. For most that is 4-6 days. Once that occurs, they begin with full liquids and fairly quickly, if tolerated, advance to a regular diet. I was in the hospital about 6 days and then my wife drove me the 2 1/4 hours home. We did make one stop to walk around a bit for blood clot prevention. When I went home, it was with a foley catheter in the neobladder to allow all the connections to heal without any pressure. I needed to irrigate the neobladder with sterile saline at least three times/day. About 3 weeks after discharge (4 weeks after surgery) I returned for my 1st post op visit to remove the foley and begin the neobladder rehabilitation. This was somewhat frustrating for me since I am fairly impatient, but over the next few months, I became fully continent during the day and not long after at night. Not sure if by continent reservoir you are talking about a neobladder or a catheterizable urinary diversion, but this is my story. Since I am new to this forum, I don't yet know how to share information privately, but would be glad to call you or receive a call from you, if I can help you in any way at any time during your journey. Best wishes,
Has anyone had a RC with Continent Diversion by Dr. Joseph Smith at Vanderbilt in Nashville, TN? If so just wondering what to expect as far as recovery. I have sent his nurse a long list of questions waiting on answers. But in the mean time thought i would ask a few here. Of course the day of my appt my mouth and tears were somehow connected and I was trying to not lose it in front of Hubby, Mom and Doc so consequently did not speak much i know not smart on my part.
So does he do abdominal incision or lap? what type of tubes do you have after? how many days in hospital? how was recovery? anything else you care to share would be greatly appreciated.
I am scheduled for Nov 4, and with each day that passes i get a little more worked up, not sleeping more than a few hours a night, not eating like i should. Honestly i am trying especially since i lost 12 lbs when i had first surgery (not been successful in gaining it back never thought i would say that)just to do the mass removal and doc lacerated the bladder and had to have cath for 12 days was totally miserable and i know this will be worse. I am trying to wrap my head around this and having a really hard time doing that. I know that i will need help afterwards and that is so hard in itself I am such an independent person I have had to do so much on my own (hubby is exmilitary was deployed 5 out of the last 8 years he was in)I have such a hard time asking for help let alone accepting the idea that i need help. I appreciate any insight you can give me. Thanks Flo