johnnyc's Cancer Blog

April 4, 2008

The journey begins Views: 188

My name is John and my journey began last October on my first day of a new job when I received a call from my primary physician saying that my urine test (taken during a yearly physical) showed a high amount of red blood cells in my urine. My mind began racing as I knew what he was getting at and this was the last thing I needed on my first day at my dream job. He recommended me to a urologist who began testing – it began with a cystoscopy which showed nothing abnormal, followed by 4 trips to the operating room for a scope of the kidneys. Each time my urologist found nothing but the cytology reports kept coming back saying high risk for high grade carcinoma. In January of this year she told me she wanted to give me a three month break and heal a bit from all the invasive testing – needless to say this did not set well with me so I sought a second opinion. Off I went to another urologist with all my test results which he reviewed and even went so far as to take a fish test (which I later found out came back positive). He told me she was doing everything correctly and I was in very good hands so off I went for my three month rest period. I will add that I had no symptoms other than the cytology reports coming back saying there was something there.

In late March I returned for my check up and my urologist told me that she was at a loss and felt she could not do anything more for me so she wanted me to see the head of urology at St. Vincentâ€™s in NYC as she studied under him and had been discussing my case with him over that past few months. I left her office and remember standing on the sidewalk thinking â€œI have just been dumped by my doctor!â€ I immediately phoned the other Dr. for an appointment and was told to come in a few days later, they knew of my case and were expecting my call. I went for my appointment with the Dr. and he was fantastic – he said he did not feel there was anything there and was confused as to why they put my through all the invasive procedures, but he assured me that if something was there he would find it. A week later I went into the OR for another scope and woke up four hours later in the recovery room (I immediately knew this was not good) to have him tell me that he found I had transitional cell carcinoma and he was certain that it was high grade. I felt as though the wind had been knocked out of me but I focused on what had to be done and did not allow myself to dwell on the sadness I was feeling. A week later I was in again to have my left kidney/ureter and bladder cuff removed. I now know that it was stage 3, high grade TTC in both the which has not spread beyond the tissue surrounding the kidney and the bladder. That was 3 months ago and I am back at work, enjoying my time off until I go back in for testing. My doctor told me on a follow up visit that the chances for 5 year survival without the surgery were 0% and with the surgery my chances are â€œpretty goodâ€. I asked about follow up with chemo and he said he does not want to put me through that unless it returns.

I find myself wondering what is next? From most of the research I read I find that many people never have it come back but unlike Renal or Bladder cancer, there is not much out there on TCC. I know that no one can predict what the future will hold so I concentrate on getting back to my normal life before I heard those three words.

Posted on April 4, 2008 at 7:12:20 AM by johnnyc ( Link to this post.