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Urachal Adenocarinoma - confused and scared

7 years 10 months ago #36315 by CatherineH
I am so relieved that you went back for other options. The more I read about the augmentation and the potential complications, the more concerned I became for you.

The doctor was probably trying to offer you a bladder sparing alternative since you are so young, but I think you have made a mature and wise decision, albeit a very difficult one. There are many here who can help you with information and answer questions about RC and any issues that might arise during your recovery.

Best wishes and I will keep you in my thoughts and prayers...

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 10 months ago #36297 by chukman
the colon patch was to give extra room because they would have to take so much of the bladder dome that the capacity would be really small.
The 2nd opinion did not go the same direction as my doctors here. I have opted for a RC with a conduit and should happen by the end of the month. It will be a lifestyle change but I really am at peace with the decision where I wasn't with the other decision.
Jack was the first person who contacted me and has been a great help! Thanks for your suggestion Patricia.

TURBT - Dec 16/10
Dec 30th - diagnosis Urachal Adenocarcinoma T2

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7 years 10 months ago #36253 by Patricia
Jack Moon should be on here shortly...he's an expert on top doctors in Canada....follow his advise. I know 2 top docs..one in Alberta at the U of Alberta ..Ron Moore, MD,FRCS
and in Manitoba......Darrel Drachenberg, MD,FRCSC. at the U of Manitoba.
Not unusual to do a partial with urachal bladder cancer but with T2 I'm not sure if protocol would be the same. I shall research for you.
pat

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7 years 10 months ago #36252 by chukman
thanks for everything. I will look and see if that is what he is talking about. It is nice to have some sort of name to research at least! :)

TURBT - Dec 16/10
Dec 30th - diagnosis Urachal Adenocarcinoma T2

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7 years 10 months ago - 7 years 10 months ago #36251 by CatherineH
I have done some searching since reading your post. It sounds like your surgeon is talking about performing bladder augmentation (augmentation cystoplasty) which is generally to increase volume after removing a portion of a diseased bladder. This may give you more information to ask your questions if in fact that is what they are recommending.

Remember that reading about EVERY surgical procedure is scary just like reading the potential side effects of any medication makes you not want to take it. Maybe you could contact him and ask if this is correct so that you can do your own research and feel like you are better informed going forward. He should be able to explain to you WHY he would choose this procedure and HOW he thinks it will benefit you over other options, as well as RISKS/COMPLICATIONS.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 10 months ago #36250 by CatherineH
Hello Annalee... I am so sorry to hear about your diagnosis. I posted a reply to you in the other thread before I read this one. I know how shocked you must be right now because I, and most everyone on this site, knows how hearing those words nearly knocks you to your knees... even more so at only 35 years old.

As I quickly found out, there isn't much information out there on bladder adenocarcinomas since they are in the "rare" category which makes this even scarier to deal with. I see you have already gotten a second opinion which is good. Did both doctors agree on the course of treatment for your surgery? It helps to have confidence in your doctor as you go through this so I hope you can get your concerns satisfied by discussing them with your surgeon. It's only natural to be scared and concerned, even with the best of doctors because when it's happening to YOU, it's impossible not to have those feelings.

The partial cystectomy has worked very well for me but I did not have to have any repair done other than just suturing up the tumor site at the dome where the wall was removed. What size is your tumor? Mine was relatively small (1.6 cm) but had invaded into the first half of the wall (T2a), so maybe the size is why some repair work has to be done in your case. Since colon tissue is used for urinary diversions, it must be compatible with the bladder and is why they propose to use it that way. I haven't heard of that, but in theory it makes sense.

You've obviously educated yourself on several aspects of bladder cancer and surgeries, and gotten a second opinion which is good. Some of those reports and statistics are pretty daunting, but treatments have improved since most of those were compiled. You are young and strong which will help in your post surgery recovery. We are all here for you.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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