Hello All, Well, my sister had her neo on Oct. 7th. I just returned home after taking care of her in San Diego. It has been a nightmare from day one. I had told her to find out how many of these surgeries he had done and his nurse said about 45 a year so I was relieved at that. Wrong information! I got to S.D. a few days early so I could discuss things with her surgeon. Well, both the surgeon and assistant surgeon were out of the country until right before her surgery and were unreachable. She wanted to go ahead with the surgery anyway in spite of my misgivings. From all my research I was under the impression that if there was any cancer in the opening to the urethra or in the urethra that everything should be removed and she should be fitted with an external bag.
Well, after a 10 1/2 hour surgery I finally get to talk to her doctor. He said the surgery took so long because he had to cut the urethra back 3 times to get rid of the cancer!!!!!!!!!!! Didn't he know that women have a short urethra to start with!!!!!!!!!! Well, he was convinced the surgery was a success. About 5 days later he comes into her hospital room and says that he got the final lab results and there is still cancer in her urethra and in the tube going to her kidney!!!!!!!!! Needless to say I was in shock. He said he was planning to go back into surgery and give her an external bag but he called a "specialist" in Los Angeles and the specialist advised him not to do that but just to WATCH IT!!!!!!!!!!!!!!!!!!!!! He said that if he went to the external bag now, she could have diarehha (spelling?) that was almost impossible to control. So I asked if she would be getting Chemo and he said no that they were just going to watch it. So 11 days after her surgery I get her home.
The instructions from the hospital said she was to have a follow up apt. with the surgeon in 10 days. Well, nobody called so I kept calling his office for at least a week and they kept telling me he had no apts. available. Finally I got really upset and said she needed an apt. now to check the cath they had left in her. The nurse finally told me that her surgeon had been out of the country again and wouldn't be back until November 4th!!!!!!!!!!!!!!! I tried, for my sister's sake, to stay calm. I said they needed to make an apt. with the asst. surgeon IMMEDIATELY!!!! WELL, he removed the cath and wanted her to self cath 4 times a day and flush her new bladder!!! My sister had brain surgery and can't learn new things very well so he agreed to twice a day. I have notes all over the walls telling her the steps on cathing so she finally is able to do that. The doctor made a follow up apt. and said for her to go give urine and blood a few days before her apt.
Well, we did that and then, right before I left his office called and cancelled the apt and said would reschedule. Well, of course this has not happened. I'm sorry to go on and on but, believe me, I have only listed a small part of the seemingly incompetent behavior of these surgeons. My questions are these...1. Am I correct in thinking that they should have gone with the external bag as soon as cancer was detected in the urethra while she was still in surgery? Especially after snipping back 3 sections of the urethra because of finding cancer? 2. Do you think she has any hope of contenence with even a shorter urethra? (She has ZERO contro now) 3. Do any of you have any suggestions about where to go from here? 4. Do you think she should be having chemo?
I'm thinking that the total incompetence shown by this Kaiser doctor should warrent them paying for her to see an outside specialist. I am just so sick about all this and she my sister is so amazing. She is going to sit down exercise class and is driving and I love her so much. I couldn't function with having gone through 5 different cancers and then this disaster in 2 1/2 years. Thanks for any words of advice or encouragement Love, Barbara
