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Had my cysto on monday following my second round of maintenance BCG. The tumor is back and my Dr. is recommending bladder removal. He advises that he will continue with another TURBT and more BCG if that is what I want; but is not recommending that route. I am being treated by Dr. Alan So at Vancouver General so I know I am getting the best care available, but I am finding this a very difficult decision.
My cancer is T1G3. I know from this site that others have had a recurrence and opted to avoid bladder removal, so any input would be most welcome. Additionaly, if I should go for the surgery, I would like some comments regarding which of the diversions people have had and how they have worked.
I am to go back to the Dr. on Dec. 13 with my decision and he wants to do the surgery early in the new year if that is the choice I make.
I look forward to hearing from you guys!
BonnieSorry to hear that your results were not favorable. I had T1G3 as well. I had my RC on July 12, 2012. High grade bladder cancer is a slippery slope indeed! I can only say that I have peace of mind now that my bladder is gone. For me, I wanted to have the best odds possible and I have no regrets. BCG did not work for me. It is a big surgery but it was not as bad as I had anticipated. I had no complications. Everything is working as it should. I chose the ileal conduit. I did my research on all three diversions and felt this would be best for me. I liked that the recovery was quicker, don’t have to cath etc. People are happy with the diversion that they choose. I forget that I am wearing a pouch. I really can’t complain. I found a pouching system that works perfect! Before I had my surgery, I was looking/reading at all the info on urinary diversions and this and that – I just felt overwhelmed and scared. Female and only 45 years old. I just thought – OMG I can’t believe this is happening to me but after talking to people who had gone through the surgery and said life is still good – it made me feel better. I also spoke with some people whose bladder cancer had metastasized and then I really felt better that I was getting it out. Life is as it was when I had my bladder and even better now that the cancerous organ is gone and I can finally sleep through the night. None of this up 6 times in the middle of the night to pee and 20 – 30 times during the day. Don’t miss that at all.
Hi Bonnie. Sorry to hear you have this decision to make. Like Magnum, my health twin, I have a neobladder and am celebrating my second anniversary with it on December 15. I will not be getting it a present, but am delighted to share a very good life with it in my ” new normal.”
I had T1G3 for over two years and did not want a radical cystectomy at all. But when my cancer progressed to T2G3 I did not have a choice. Men seem to do well with neobladders and many women do as well, though there are sometimes issues to deal with as a woman that men do not have to worry about.
Is Dr So recommending one diversion? Many women seem to opt for the Indiana Pouch; it does involve catheters each day, but is an internal pouch. I know Zina on this site can give you the low down on that diversion. She is delighted with her choice. But sometimes you are best to go with the doctor’s recommendation if he is making one. He knows your history the best and knows what is the best option from a surgical point of view for you.
Know this: Life is good. And Magnum is not as normal as he likes to think he is!
GregHi Bonnie, sorry that I am a bit late getting in this discussion. You have some big decisions to make and it is great that you are seeking out as much information as possible. I had stage 2 high grade BC. I had my RC in July 2011, and as Greg mentioned, I have an Indiana Pouch (IP). This is an internal pouch constructed of my large intestine. Part of the small intestine forms a channel from the pouch to my abdominal wall. There is a small opening (stoma) on my abdomen into which I insert a catheter (painless) 6 times a day to drain my pouch. I do like my pouch. I like that I can still wear all my regular clothes, including my bikini on the beach. I can drain my pouch just about anywhere, including my car! There are downsides, like always needing to carry around my supplies, and waking myself in the middle of the night to drain my pouch. Also, a cystectomy is a huge operation, and the creation of a neobladder or an IP add extra complexity to the operation. Chances for complications exist, regardless of the type of diversion you choose. The recovery from the RC was slow and long, but now, I can say my life is pretty much back to normal. I will say, as I have said to others preparing for an RC, that regardless of the diversion you choose, you WILL adjust to life without a bladder. The important thing is to get rid of the cancer. If you want to know more about living with an IP, please send me a private message. I would be happy to talk to you.
Wishing you all the best,
ZinaBonnie, sorry you are facing this, Can’t help with your decision process but having just ‘yeah’d for Jack’s good news, I want to do what little i can to be supportive for your news also. Sounds like you are getting care from a great doctor, and have some good folks to talk to here who have been where you are. Best wishes.
JackieBonnie, I can see why your Doc suggests and RC. It’s unfortunate that you can’t get Valstar in Canada. That would be worth a try. It’s a tough decision. I definitely would not let this go more than a sate II. I don’t think BCG will be workable but I do think it is worth another try as long as you have frequent cystos as you have been having. I wish you the best.
Kiowa
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