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Three Month Cysto - Never Clean

11 years 7 months ago #22177 by Patricia
You made the remark about money and traveling for second opinions......If its an insurance thing i understand. But i found a really unique way of getting those second, third and fourth opinions by taking advantage of the airlines "last minute deals"...We would arrange our appointment on a Mon or Tues and travel on Saturday with all costs included and leave after the appointment. I was working free-lance so no problem...my husband a teacher who took a sick day to travel with me and with the employer fully understanding. We're just average people with average incomes but it would have been a disaster if i had remained in a city with very few experienced urologists except for Prostate Cancer. You're in a great place with some great facilities. Pat

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11 years 7 months ago #22174 by eddiek
The Wife Again,

I'm Cynthia's husband and wanted to give you my thoughts:

> We live in western MA, almost on the NY state line. Cynthia was diagnosed at our local medical center, but then went to the Claire and John Bertucci Center for Genitourinary Cancers at MA General.

> She has also consulted with a doctor at Beth Isarel Deaconess Medical Center. She could provide you with additional information if you send her an e-mail.

> If your husband's doctors have started to talk about an RC, I'm sure that you have started to research the procedure. Before Cynthia's RC, we visited a doctor at Johns Hopkins in Baltimore, MD. He provided us with information related to the three most popular urinary diversions: 1.) ileal conduit, 2.) Indiana pouch, and 3.) neo-bladder. Being an engineer, if found it interesting that in his female patients, it was about an equal number for each of the three common diversions. For the male patients, the Indiana pouch was about 10 to 15 percent and the remaining number were about equal between the ileal conduit and the neo-bladder.

> If your husband does need to have an RC and all three options are available to him, then he'll need to decide on which type. Obviously, as with any surgery, the doctors can't guarantee which type he'll receive until they acutally operate.

> As Cynthia's posted indicated, the goal is to beat the cancer, but there are also quality of life issues that your husband needs to consider and discuss with his doctors. Many doctors have a preferred diversion which they are comfortable using.

> The ileal conduit is the simplest of the three to perform and therefore, less time is required to perform the operation. Also, many doctors are now addressing nerve sparing techniques that should be considered and discussed.

Hopefully, this information will provide you with some things to consider and discuss with your husband's doctors. One last suggestion, every Sunday at 8:00 p.m. Eastern Time, there is a "real-time" chat where several of the users come together to share what's happening in their lives. It's a good group with many ideas and suggestions.

Please keep us posted on how things are going.


Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver

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11 years 7 months ago - 11 years 7 months ago #22170 by TheWifeAgain
Patricia wrote:

OUCH...a biopsy in the office? You are so close to so many top facilities that deal in large volume with blc. Have you been to MSK in NYC yet? I personally can't say enough good things about them. If i hadn't had my second opinion there and second TURB i'm positive i wouldn't be here today. I just read a figure where most local uro's do an average of 3 cystectomies a year...at MSK...probably each one of their blc surgeons does close to 200 and they have some of the best pathologists in the country.
I agree with Cynthia completely. I don't know what it is about our bladders???? We'll chop off or take just about anything else out of us but we're completely obsessed when it comes to our bladders. Truth is the diversions work...takes a bit of training...but they work.
Pat


It was not a very pleasant experince to say the least. Also the delay of having to lay there while they went to get the cautery machine to stop the bleeding was torture. I was sweating more than my husband. He's a trooper.
We went to Brighams and Womens twice since diagnosis and also to a local oncologist who is directly affiliated with B&W. That was a good move on our part becasue he called while we were in the appointment room and we had a conference call with the chief of urology. At that point in time everyone was on the same page.
Early on we had a discrepancy on the tumor grade. Two pathologists were using two different systems to grade the tumors yet they worked in the same lab. Go figure. Since then we have the biopsies sent to two different labs EVERY time for our own peice of mind.
Money is a huge part of why we cannot travel too far to gather 2nd and 3rd opinions. I know money isn't everything but we do need a roof over our head and if I miss work in today's economy we would quickly drown.
Rosemary~
I do truly appreciate your opinion. I lurk a lot and you are always so level headed and honest. Thank you.
Cynthia~
During the Cysto Friday Dr C did point out all the scar tissue. It's everywhere. My husband's tumors have been in all different parts of the bladder. It's almost as if they never grow in the same place twice.
My line of thinking regarding the scar tissue is not that it is a contributor but maybe a tougher surface for the cancer to "grow" through.
What made me wonder regarding the cancer growing out of the bladder as opposed to into the bladder, was earlier this spring I saw a flower grow out of the cement but there were no flowers an inch away in the dirt. If a flower can force it's way through cement before it grows through the dirt, why can't the cancer be the same way?
Sorry if I ramble but it's been an unsettled weekend around here.

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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11 years 7 months ago #22152 by Cynthia
To answer your question about scar tissue and it being a contributor to invasive blc. I not never read any research indicating that this is the case but then I have far from read everything; I would ask your Urologists about this if it is a worry for you. What you may be seeing as far as the lining of the bladder looking so angry at this point could be from the BCG and not all scar tissue. Again I would ask my Urologist for clarification.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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11 years 7 months ago - 11 years 7 months ago #22151 by Rosemary
If you are truly asking my opinion then I say to go for the RC. Lot's of people live very well without their bladders.

I am T1 G3 also, and if my news gets to be similar to your husbands's then I think I would rather have my life than my bladder.

If the BCG isn't working, I just don't see any choice.....

Good luck,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 7 months ago #22149 by Patricia
OUCH...a biopsy in the office? You are so close to so many top facilities that deal in large volume with blc. Have you been to MSK in NYC yet? I personally can't say enough good things about them. If i hadn't had my second opinion there and second TURB i'm positive i wouldn't be here today. I just read a figure where most local uro's do an average of 3 cystectomies a year...at MSK...probably each one of their blc surgeons does close to 200 and they have some of the best pathologists in the country.
I agree with Cynthia completely. I don't know what it is about our bladders???? We'll chop off or take just about anything else out of us but we're completely obsessed when it comes to our bladders. Truth is the diversions work...takes a bit of training...but they work.
Pat

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