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My Story

8 years 9 months ago #39391 by GKLINE
Welcome to the site.
Thank you for your story. They are all "warfare and survival" epics.

Compared to everyone else..... you had no easy time of it. But you came through. Congratulations!
And.... good for you for taking charge of your care. That is what our takeaway from this site is


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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8 years 9 months ago #39351 by Cynthia
We all pay our dues with bladder cancer one way or the other. I have functioned well for years and all I have left of my native urinary system is one kidney and a ureter with a Indiana Pouch. Welcome to our community! I hope you will post more so we can get to know you further. This area does not get many posts as a rule as it is used for people to post their personal stories so sorry it has taken me so long to welcome you.

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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8 years 10 months ago #39305 by aibass
My bladder cancer story starts in August of 2007 on Friday (all my medical emergencies seem to start on Friday or Saturday). I am a WM 64 at the time, reasonable health. I went to pee, noticed there was a little urine in my blood. My wife brought me to the nearest ER, they looked at me, agreed there was a lot of blood, kept me for a few hours until I seemed to stop bleeding. They set up an apointment with a urologist for Monday.

He looked at the results of blood tests and set upa cystoscopy a week later. I have some stents in my heart, so I take Plavix and aspirin that I had to stop which was why the operation was a week later. The operation went as planned, and I was sent home and told to start the Plavix after five daya. Big mistake.

Ten days after the operation, I had the mother of all hematuras. I went to a different ER (where my wife works). Pain, bleeding, agony. They had trouble inserting a catheter and were set to discharge me when the bloodwork came back. I was anemic and my platelet count was very low. Needless to say, I was admitted with a foley catheter and two pints of blood being transfused. For the next three days, they pumped in saline and drained the bladder. I can go on and on about the joys of my stay, but it is of interest only to me and my wife.

When the bleeding stopped, I was discharged. I passed clots for a day or so. When I was leaving, one of the doctors mentioned that I had been diagnosed with bladder cancer from the urologist.

My wife insisted that I go to a urologist at her hospital who is an urologic oncologist. He did examined the slides from the3 first urologist and found carsinoma in situ. I begAN the first round of BCG. Three months later, another round of BCG, followed by a cystoscopy in April.

There wer no signs of CIS at this time, but a round of three BCGs. Cystoscopy in July, then October, and a round of three BCGs in November.

May 2009, cystoscopy with "suspicious area." Three BCGs in July followed by a cystoscopy in August. The "suspicious area" was still there, so I had cysto with biopsy in September, December, March 2010, July. Some irritaition found, no cancer. January of this year, he did a cystoscopy and reverse pylogram (?) and found a spot in a ureter so he did a biopsy. No longer superfical, but no in the muscle.

We decided to be a little conservative and went for a nephrostomy tube into the kidney and BCG through the tube. Joyous to have a hose running from my side for three months.
Agresssive would be to remove the kidney and ureter.

I just had a new cysto and biopsies done. The doctor said that he saw no sign of cancer, but there was a mass in the ureter that might just be scar tissue. Patholgy says not cancer. There are some tests being done (FISH) and other. Now I get to wait for two weeks for the results.

I try not to complain. I think of what other cancer survivers go through and my story is a walk in the woods in comparison. I worry about what they will find, but I guess the worst that I'm looking at (for a while anyway) is losing a kidney and ureter.

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