Hello, my name is Charlotte I am 38 and have two children 12 and 8 years old. I used to worry about my husband getting lung cancer since both his father and grandfather died at an early age from it. We both quite smoking cigarets 11 years ago. He still has an occasional cigar.
March 15, 2008 saw blood in my urine and made an appointment with doctor for next day. For the next month they treated me for UTI and Kidney stones.
April 16, 2008 now having dark red urine. Had a complete physical and was told I was healthy and was told to hang in there the stone would soon pass. I demanded to see a urologist. Referred to a local group who said they could not see me for a few weeks. I asked if there was another urologist I could see in the area. They informed me they had a new partner that had just started who could see me that day.
My luck had changed! Dr. Vemulapalli had just moved back to CA, but had recently been head of urologic oncology in Oklahoma. He agreed that there was something wrong and ordered a CT and scheduled a bladder scope the soonest the room was available.
The day of the bladder scope Dr. V informed me the CT showed a tumor at the top of my bladder. He would try to scrape some of this during the bladder scope and send the wash for analysis, but also wanted to schedule a biopsy. Talk about your world spinning out of control. After the scope he said that the tumor appeared to be small and superficial. He was hopeful that he could get it during the biopsy. The biopsy was scheduled for the following Friday.
After the biopsy he talked to my husband and told him things had not gone as well as he had hoped. He could not get all of it and thought we would have to do a partial cyctectomy, but he wouldn't be sure until pathology was back. Then they both came in and told me.
When pathology came back as T2G3 my world seemed to implode. I asked questions with one part of my mind while the rest of me gibbered in fear. Dr. V felt that he did not have the resources he needed to perform the procedure as our area does not have a major hospital. He referred me to his mentor at UCLA Dr. deKernion. After discussing my options with both doctors I opted for an RC with neo bladder.
On May 22 I had the operation. My experience is similar to others. I will note that there are a few things they don't tell you. After 12 days my staples were taken out and I was sent home. They told me the scar might open a little, but that this is normal. Within two days I had a huge hole at the top and bottom of my scar. I called Dr. V in a panic and he looked at me, cleaned me up and showed my husband how to clean, pack, and bandage the wounds. My poor husband had to manage this because insurance would not send out a nurse because I was not bed ridden. Today is July 2nd and my wounds are almost closed. The other thing they did not mention was the amount of leakage I would have when they removed the super pub. they said I would have a little seepage from the site for a few days. That night I woke up soaked and not from my diaper. For the next two days I seemed to have dual peeing action. Thank God that is over.
My post op path showed the tumor was T3A and that I had had microscopic cancer in one lymph node.I have already had 1 consult with an oncologist about chemo and am scheduling for a second. Really scared about chemo, but am sure it is the right thing because I want to be around for my children.
It's still hard to believe my life has changed so much in such a short time. I am thankful for a place like this. Where I can learn and vent with others.
Charlotte
P.S. We have informed my sub-par doctor that blood in the urine should always be checked for bladder cancer no matter what your gender or age. I am currently looking for a new primary care doctor.
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