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Quandary??

6 years 9 months ago #45243 by CatherineH
Hello Louie... Sounds like you are moving forward as planned in taking care of things. I'm very sorry to hear that the cancer has been confirmed and you will be undergoing a radical cystectomy, but the good news is that the cancer was discovered sooner than later and you will be undergoing a radical cystectomy to be cancer-free! It's all in how we look at things isn't it?

We have quite a few members here with Indiana pouches, but most I'm aware of are women, probably due to the fact that neobladders are not often recommended for females. There are probably some men also that I just don't know about. That is a rather alarming statistic that Dr. Steele gave you at 20% repair rate. I did read here that a couple people had to have a ureter reattached due to blockages, one of them being Cynthia. I don't know how extensive a surgery that was.

There are also several guys who have the outside bag and they seem to be doing just fine and living active lives. Nearly everyone with a stoma from either procedure may have some degree of outer leakage at times, but they soon learn how to best deal with it. Also, you might want to call Dr. Kibel on Friday and just tell him you need the weekend to think about everything and you will give him your decision on Monday if you need a bit more time. I don't think one workday will make much difference, and this is something you don't want to feel rushed into. I hope you hear from some other members who have "been there" where you are right now.

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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6 years 9 months ago #45241 by realdeal
Hi everyone. Well I had my appointment with Dr. Kibel and his pathology report also said the cancer still exists. I am not a candidate for a neobladder because I had a radical prostatectomy 3 years ago. So that leaves the Indiana Pouch or the Ileal Conduit, (outside bag). Dr. Kibel suggested the Ileal Conduit which is his specialty and because of the potential of an internal leak but had me speak to another Dr.today whose name is Dr. Steele who does more of the Indiana Pouches. Dr. Steele mentioned about 20% of patients with the Indiana Pouch will have an internal leak and that could be quite serious and require additional surgery. I wanted the Indiana Pouch but the prospect of the danger of it leaking internally has me absolutely frozen as to which one to pick. This is Tuesday August 20th. and he would like me to call him Friday the 23rd. hopefully with my choice and then we can get started on scheduling surgery about 6 weeks down the road. Thanks very much for any help you can offer. Louie

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6 years 11 months ago #44959 by realdeal
Hello Catherine H. and everyone else. Update. It was decided with my local Dr. to go back in to scrape etc. and send it to pathology to see if there is cancer. In other words, start the process all over again. My surgery is scheduled for next Wednesday July 3rd. and my appointment is July 9th. to discuss the results. I have a July 24th. appointment with Dr.Kibel in Boston to also revue the results. He will have the slides sent to his pathology and the results by then. Cancer is on it's own schedule so naturally it makes me nervous having to wait for this process to unfold. I know my local Dr. here in Providence is not to happy with my wanting these 2nd. opinions. T.S. I guess. From the day I met him I asked him if he knew any Drs. in Boston. Totally open with him. Thank-You. Louie

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6 years 11 months ago #44857 by CatherineH
Hello Louie... Yes, no, maybe???? That's enough to drive a person crazy! I spent a few minutes reading back over all your posts. I see you've had TURBTs, 2 rounds of BCG, and have been diligent in pursuing information and visits with your doctors. And after all that, you do not have a clear picture of a definite diagnosis. That is truly maddening!

I know you want Dr. Kibel to perform your RC if it comes down to that. If he still does not think it is needed, have you considered going back to Dr. Dalbagni at Memorial Sloan Kettering? If they cannot confirm that you are "all clear" after the BCG, perhaps you could revisit your case with Dr. Dalbagni.

I really don't know what else to say at this point. Please let us know what is next in your decision making. Best wishes on getting some resolution soon!

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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6 years 11 months ago #44856 by realdeal
Hi Catherine H. Well Tuesday my local Dr. called John Hopkins for the results of the pathology report and was told over the phone the pathologist could not say if there is cancer. Not a yes or no. It was called "suspicious". So know I have a Yes, a No and a Suspicious. I am leaning toward having the bladder removed because of what I call full blown incontinence from a radical prostatectomy in 2010 AND ,to my knowledge, bladder cancer has a high reacurrance rate, but as stated previously, Dr. Kibel in Boston will not because his pathology report says NO cancer. He is the Dr. that I would choose to have it removed. Quandary may be putting it mild. Please respond. Louie

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7 years 2 days ago - 7 years 2 days ago #44820 by CatherineH
That does present a quandry! I certainly understand why Dr. Kibel would not do bladder removal when his pathology department says there is no cancer. That would most likely constitute all kinds of fraud... medical, insurance, etc.

On the other hand, your local uro says his report DOES indicate cancer. I would encourage you to try (I know "try" is very difficult") to not get overly stressed about it until the results come back from Johns Hopkins. Also, perhaps your local uro could send his report to Dr. Kibel as well if that hasn't been done already. Mix-ups do occur and being diligent is of utmost importance for you to ensure they are looking at YOUR slides and the paperwork is all correct.

If there are still conflicting results, and you are already being reviewed by two very reputable hospitals, then if it were me, I would choose a third alternative to weigh in.

I do hope Dr. Kibel is right and there is nothing there to warrant the surgery. Please let us know how things go...

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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