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.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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.