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This year has been a blur...

7 years 10 months ago - 7 years 10 months ago #36248 by CatherineH
Hello Annalee... So sorry to hear about your diagnosis. You are the only other person I have heard from that had an adenocarcinoma. I did not have to have any repair done to my bladder. He just removed the portion of the wall around the tumor site and sutured it up. My tumor was also at the dome and relatively small (1.6 cm) and was only inside the bladder. They did not call mine a "urachal adenocarcinoma". During the surgery, the doctor did remove the urachal remnant but the pathology report showed it clear of any cancer.

How did they diagnose you? Is the tumor outside the bladder and present in the urachus? Perhaps that is why he needs to do some repair there. There are many people here who have had a portion of the colon used to create urinary diversions after their bladders have been removed. Using it to repair a portion of bladder, if that is what he is planning to do, is something I am not familiar with either.

Did he give you other options? I was thrilled to be able to have just a partial rather than to have my bladder removed. I do understand a small percentage of patients fit the criteria to only have the partial procedure. It will be a year post-op on Feb. 25th and my bladder looks like it did before I had the surgery when viewed onscreen during my last two cystoscopies.

Write down your questions or things you are uncomfortable with to discuss with your doctor. Ask him how many times he has performed your suggested procedure. It may not be too many since these tumors are relatively rare.

You will find a lot of expertise and comfort by sharing your experiences, questions, and concerns here. I wish you the best as you work through your treatment. Please keep us informed of how things are going. Sorry I couldn't be more helpful.

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 #36240 by chukman
hello...
my name is Annalee and I live in Canada. Dec 30th I was diagnosed with urachal adenocarcinoma and last week the doctor said he wants to do a partial cysectomy with colon repairing the top of the dome of the bladder. I have never heard this done and wondering if they did this to you too or did they just take out the urachal tumor and sew your bladder back up. any help would be appreciated..this procedure isn't sitting well with me right now. thanks

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

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8 years 1 month ago #34705 by CatherineH
Hi Nancy... Thanks. It does seem that my life is now carved into 3-month chunks. At my first cysto, I was so stressed out because I feared it would be painful. As it turned out, it is just really no big deal and the nurses are so gentle and kind during the prep. The doctor showed me the little crater where he had done the resection. In August, he could not even tell where the surgery had been because it had healed over completely. Both of those were huge reasons to celebrate.

I return on 11/22 for the next one and I think I am more nervous about the CT finding something that "escaped" or was overlooked the first time than I am about another cysto. In my saner moments, I know chances are better than good that all will be well, but getting a clean CT scan would be the best Christmas present ever.

Congratulations on being "promoted" to your 6-month cycle!

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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8 years 1 month ago #34704 by Nix
Welcome Catherine :laugh: I am so happy you found us and all the supporters on this site.I think you are dong great, with everything that you have been through the last nine months! It just takes time to wrap your brain around everything.
I went the BCG route, and I am now three years out, without a re-occurrence. Since I am on the 6 month schedule for cystos, (this is my first 6 month cycle), I can tell you, my worry is less. I do think I am cautiously optimistic. I think when you are in the three month cycle for cystos, it seems it is always on your mind.
I am so happy everything fell into place for you. I too, had an ER doctor take time and do a sonogram and find the bladder cancer.
Be sure to celebrate every clear cysto because it is always fun to find a good reason to party :laugh:
Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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8 years 1 month ago #34703 by CatherineH
sara.anne wrote:

Welcome, Catherine!! Glad you found us at last. Now you know lots of people with bladder cancer :) Like you, I had never even thought about my bladder, let alone think that something could go wrong. And the worry does sort of recede into the background...never goes away, however.

My feeling about "stuff" that might/or might not cause bladder cancer is that if we need to stop using/eating them the time would have been about 20 years BEFORE our diagnosis when the cells and their DNA were being affected. What we do now is sort of after-the-fact. Which is not to say that we shouldn't have healthy habits...better late than never!!

Sara Anne



Hello Sara Anne... Great to meet you. That is such a great point about 20 years ago and one I had not considered. In another post Pat mentioned that half the people on the site had never smoked, and it occurred to me that while I never smoked myself, over the first half of my life I was exposed to a lot of secondhand smoke at home as a child and later in the workplace. So just because we didn't smoke, it doesn't mean we escaped some of its harm. Of course, that and hundreds of other things that are part of existing in the world! Too much to worry about as I am quickly finding out.

I appreciate so much your point of view!

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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8 years 1 month ago - 8 years 1 month ago #34701 by mmc
Catherine,

There are around 600,000 bladder cancer survivors in the U.S. alone. So...no, you are certainly not alone in this.
So glad you found us and am looking forward to more posts.

Mike

PS: CUTE dog!!! :)

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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