Sister having RC, please help

This is a 5 month old post...if you want to catch up on Barbs sister skip ahead to
www.bladdercancersupport.org/index.php?option=com_kunena&Itemid=27&func=view&id=23332&catid=5
Pat

Barbara,

It's so awesome you are there for your sister during such a difficult time. She is in a tough position...struggling with which way to go...what is best for her and there being so many unknowns. I was 57 when I had my RC, almost two years ago and after much consideration, chose the Indy Pouch...and have been very happy with it. My doctor would not even consider a neobladder for females...our spikot is too short he said, and there is just too many problems with incontinence. I did find a doctor who would have done a neo for me but he informed me that all of his patients had to self cath.

I am pleased to hear your sister may now be considering the illieal (the bag) because there is the possibility that the doctors may have to resort to that anyway...they don't know what they can do until they get in there to operate.

I want to reassure you that in most cases we learn to accept and adapt to whatever diversion we end up with....humans are amazing that way. She is obviously quite a fighter or she wouldn't be here today to take on another battle with cancer. She will be in my prayers. You may want to check out my web site (www.bladdercancerwarrior.com) which relates my experience with cancer...perhaps it might bring her some comfort. Melodie

I am 60 and had my RC in Sept. with an illeal conduit. Many people think that the bag is the worst diversion but I have been very happy with mine. I have not experienced any problems and do not even think about the bag being there anymore. My husband and I just returned from a 2 week trip to India and I did very well.

The only blip I had was with my first scan after surgery in Dec. It detected a "soft tissue prominence" but my recent MRI last week showed that this nodule was stable and therefore not cancer. My doctor also scoped my vagina where the nodule was and said everything was normal. He did the scope only for my peace of mind.

Actually my quality of life is better after my RC. I told my doctor this, thinking he had never heard it before, but he said he hears that all the time especially from people like me who had interstitial cystitis.
Nancy

hi i know how she feels, i have an indiana pouch and find it quite hard to live with. if i was her i would just tell her to get the bag. the surgery lasts for 7 hours which i had quite a rough time. but then again everyones different, i just maybe just could not accept it at first. as really i was well right up until i had to get it removed. the only problem was for me was blood in the urine. then all of a sudden i was told if i dont get it out i would be dead in 6 months, so really its up to you to decide. i am 45 years of age and find it quite hard to get in touch with people who has had this surgery, as its quite a rare surgery to have, they just took it that i was young so they suggested the indiana pouch. i feel for her as its quite a difficult decision to make. being a single parent with a 14 year old and having to get a full hysterectomy as well did not do my confidence much. also i am on antidepressants, maybe its just that before i had this surgery i could go out and have a drink with my friends, but now if i start to drink i leek alot as you have not got any sensation like you dont have the feeling of needing to go to the toilet you just leek. but sometimes you can get a feeling dull ache at the side of your stoma which then indicates that you need to go to the toilet but really if i was you i probably would have just had the bag, susan please feel free to email at my on site email here, take care and i am thinking of you susan

Thanks so much for your concern. I have done all I can to make sure that she has all the information. I have talked with my friend who is a doctor who has done all three types. She told me this morning that she has decided to go with these doctors and is doing the neobladder and for the first time I hear some peace in her voice. She said both doctors insisted that this would be the best proceedure for her. What concerns me is.....If they get in there and find that the urethra is cancerous then, since they don't do the Indiana, she will have the external bag. She understands all this and is to the point where she can absorb no more and seems settled with her decision. For the first time in a long time she got out and worked in her garden. I don't know the exact wording but ..."to plant a garden is to believe in tomorrow". For the first time, after making this decision, I feel like she believes in tomorrow. It's hard to keep quiet and search for alternatives but I will and will support her all the way. I'll be leaving in a few days to go be with her for the surgery and will probably stay there about a month. Your words, and the words of many others on this site, have been a life saver for me. I am so grateful to you all. Now I could use any words of encouragement from women who have had the neobladder. Thanks again...I can't believe how you all feel like family. Love, Barbara

well she has had non invasive blc and probably had instillations of BCG...She would have had a trans urethral resection of the bladder which is what i referred to as a TURB to determine her pathology. Its obviously invasive at this point and i guess you don't know if its into the lamina propria or the muscle?...Is there noone within the Kaiser system that does an Indiana Pouch?...Kaiser is a large system...as long as the hospital is recognised by Kaiser can't she go out of the city?
I love health insurance..........Pat