As well, I can not say that I have had the SAME experience as you but I am learning that each of us endures our own complications. My two cents in the ring says that if your original Dr can't help the situation after one try says it's time to look to others. As Lou says, I too beleive that we have to take the bull by the horns and not only understand what is happeninig with our body but also exactly what the Dr intends to do to solve it. If it makes sense, move forward. If not, ask more questions.
While I was recovering from my surgery in the hospital I was not comfortable with one of the evening nurses and how she wass handling a situation. After some discussion I finally said, "I'm sorry... and do not take this personal but this is my only chance at a semi-normal bladder (neo-bladder) and I am not willing to take chances. I am asking that you either get your supervisor or leave the room and I will take care of things myself but I will not wait till morninig when my Dr. does rounds (as she was suggesting).
Lynne, I do wish you all the best... never stop looking for the right solution.
Believe in yourself,
RC w/ Neobladder 8/22/06
I know nothing about your specific situation, but I am wondering if anyone has contacted MD Anderson Hospital in Houston. I know they have an incredible track record with treating cancer patients, and I also know they have a great deal of experience treating Urologic Cancers. Even if you have to contact them yourself, it's what I would do. If nothing else they might at least confirm what the doctor at Vanderbilt has told you, and it's my understanding that these 2nd opinion situations don't necessarily require you traveling there yourself. Sometimes we have to take the bull by the horns ourselves in order to get all the answers necessary to help us feel confident in the medical treatment we're getting right now.
Best of Luck, and keep us updated like you've done so far.
Ps. Just curious where you're located (if you're willing to share)?
Well a little update yes the leaking started all over again this time worse than ever! My Dr. wants me to see Dr. at Vanderbilt to fix or I may go to L.A. or San Fran. The Dr. at Vanderbilt wants me to wait 3 months from last surg. which puts us at the end of Nov. so this is so very uncomfortable with urine draining constantly and this tubes are still in my kidneys and will have to stay there 4 to 6 weeks after next surg. ... WOW just when you think things can't get worse and yes I do feel like I am the only one out there with this going on. If anyone has had the same I really would love to chat. Lynne
Okay just want share some good news I as of now have had no leaking all day!!I will say it feels as though I am having urethra pain as it was once? Phantom pain I guess, makes me run to the bathroom still out of habit. Anyone ever had the same? The same anything that I have had??Please responed. Thanks Lynne
hello all, my name is Lynne and I just had in 5-06 my urethra, bladder and all female stuff out. I guess having cancer start at the urethra at age 44 is very rare. Anyways I just had a second surgery on 8-30-06 as my pouch inside(I guess i will just call it my NEW bladder)was leaking down through my vaginal just like I had my own stuff still. This Wed. it will be 2 weeks since second surgery and I have started leaking a very small amount but still its a leak. My Dr. said he found a small pin hole where my urethra was taken out so he was able to just use part of my vigiania and flap it and sew it and now I wait. I had tubes put in my back into my kidneys to divert the urine for 10 weeks now and have another less than 5 weeks to go. So i am waiting to see, praying that the pin hole leak that was just fixed is really fixed. I am blessed that there were no signs of any cancer left and pray it stays like that. I have not had anytime to morn the loss of my own parts as of yet as family problems,deaths, who would of thought it could rain so much BAD stuff in just 9 months. Any coments on my leaking would be appreciated. I also took photos of the different stages of what I went through (tubes) etc. that I would be more than happy to share. I wish I would have found this site sooner as the questions from diag. to 7 weeks after surgery and well I guess still the questions never stop. Thanks for the site Lynne