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Asking for your experience

3 years 8 months ago #52654 by Debcan
Thank you again Sarah Anne... You definitely gave me food for thought which will help me ask more questions when I meet with my surgeon. I will also discuss this with my husband to see what he thinks as well.

Deb

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3 years 8 months ago #52652 by sara.anne
I have not had a cystectomy. Fortunately, my high grade CIS has been kept in check by BCG now for almost 9 years. However, as you can imagine, I have done a lot of "what if" thinking! And I am not sure whether I would go for the Indiana or the ileal. Part of it would depend on how old I would be at the time IF IT CAME TO THAT.

I didn't mean in my response to you to recommend one or the other. I just wanted to point out that the reasons for the recommendation of the ileal conduit may NOT be that of all the choices it is the right one for you, but that it might be the only one the urologist is comfortable doing. And this brought up the question of how "up-to-date" he might be.
Just something (more) for you to think about.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 8 months ago #52651 by Debcan
Thank you Sarah for your very informative reply. My doctor has done the procedure he is recommending hundred times. But now I am wondering, if like you say, they recommend the ileal conduit because it is the easiest. I guess I will have to ask him those questions.

What procedure did you have and what was your experience.

Deb

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3 years 8 months ago #52648 by sara.anne
Sorry to hear your news, and I can understand your concerns. I think that it is important that you consider getting a second opinion at a center that treats LOTS of bladder cancer patients.Yours is not the most common type and not all urologists are really trained to treat it.

I really like my urologist and have full faith in him. However, he told me that if it ever comes to my having to have a cystectomy he would INSIST that I get a second opinion; this is too important not to.

As you may have read, there are three general types of urinary diversions after bladder removal. Here is a good summary of them

http://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion

The first, the ileal conduit, is the simplest surgery as your doctor has mentioned. And therefore it is the only one that a lot of urologists are competent to do; this is why they "recommend" it....they really can't do the others. In some cases due to the location of the tumors or the poor health of the patient it is the best option. Patients do manage quite well with an abdominal bag.

However, there are other options. The Neobladder is perhaps the most complicated surgery and has been problematic in women. Women often are not as successful as men and can have problems either being incontinent or hypercontinent.

The Indiana Pouch is sort of a hybrid and has been quite successful for women as well as men. Cynthia, our president, has this diversion and if I didn't know her really well I would never know she had it.
There is nothing outside the abdomen.

This is the rest of your life and you want to find a surgeon who can offer you more that the simplest option, if that is what you want. You want to find a surgeon who does MANY of these operations, not just one or two a month....otherwise he is really practicing on you.

You have had your chemo and you do have a little time to do your research and make some decisions about which surgery YOU would prefer. You will be living with it for a long time.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 8 months ago #52643 by Debcan
I have just finished chemotherapy and I am in the process of scheduling surgery to remove my bladder. My doctor mentioned the most recommended procedure is An ileal conduit. I just can't seem to wrap my head around the fact of having a bag attached to my abdomen. It seems so foreign and I can't imagine how my husband will look at me when we are with each other. Not to mention, I keep wondering how it's going to look through some of my clothing. I can't seem to get this out of my head I would like to hear some of your opinions or experiences for those that have had this procedure done.

I just keep getting questions popping up in my head… How do you take care of it in the shower or when you go swimming, how can I even imagine being intimate with my husband, how do I empty it if I'm at work, and, I seem to be reading a lot about people having leakage… What is with that?

I just wonder if there is in a better way to go about this. My doctor did say this procedure is the one with less complications and problems. He also mentioned that they take a lot more than just the bladder. I am just very sad, although I do realize taking the bladder is the best way to be sure we're almost sure that the cancer will not return. I guess things could be worse but this certainly is not a fun journey.

Anything that you can share will be helpful.

Thank you,
Deb

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