Minimal Invasive Surgery, neobladder contruction, erectile nerve sparing.. Stage 2B/3A Grade IV Muscle invasive cancer..2.5 years later.
I would like to introduce myself. My name is Roger Barton and I live in Orlando, Florida. I was just a normal guy trying to make a decent living, living my life in peace, and trying to have a happy and healthy existence. Life was just getting back to normal, after spending the holidays with family and friends. The year 2002 had just started, and I, like many other people, was optimistic that 2002 was going to be another exciting and wonderful year. The story really starts about 7PM in the evening in mid-January 2002. I was just getting ready to retire, and like most people I had my nightly ritual of washing my face, brushing my teeth, and of course urinating before going to bed. I remember standing there in front of toilet, looking down as I normally did, as I started to urinate. All of a sudden my heart stopped beating, a cold chill went down my spine and my face felt flush and sweat started to form on my brow-line. My urine changed colors right before my eyes, from clear to a shade similar to that of blush/rose wine. My mind immediately tried to justify the color change. What did I have to drink or eat today? Is there anything that I ate or drank that could cause the change in color? Did I do something to my penis that may have cause a blood vessel/vein to burst? Think Roger Think, there has got to be a reasonable explanation for this happening!! By this time I could not even hear myself think as all I could hear was the sound of my heart pounding loudly.. I quickly went to the Internet to look up “blood in urine” and well I was told in all cases, “see your Doctor immediately”. My symptoms could have been anything from a blood vessel, to kidney stones, to prostate issues, to kidney disease or bladder cancer. The Internet is a wonderful tool, but in this case, there was nothing that I found that could rationalize the blood. I decided that evening I would go to bed and call an Urologist first thing in the morning. Needless to say, that night I did actually find the proper diagnosis, but it was also the one I felt was the long shot. Bladder Cancer.. It took me almost three months to obtain the correct diagnosis, as because of my age and my physical appearance ( I worked out with weights and had a very solid body) and healthy diet, the Urologist felt that cancer was the most unlikely cause of my problems. With that said, the following represents an actual, unedited account of my experience as I posted them to this website. I have only edited areas where the grammar was exceptionally bad. Hey give me a break!! I had a lot on my mind at the time, and grammar, to the dismay of my many English teachers/professors, was not a concern at the time. So here we go, my first posting to this site occurred on 05/22/2002.
Hi!! I am a brand new diagnosis and I am also almost 35 years old. I was just diagnosed with TCC Grade III last week and needless to say I am pretty scared.
At the end of January this year, I started having blood in my urine. I went to an Urologist and he thought that I may have kidney stones. So he did a few tests to find the kidney stones. After a spiral CT Scan of the Pelvis area, he found a very small stone in my left Kidney. He stated that it would come out on it’s own and that he would see me in 6 months. I asked him “what about all the blood and the clots I am losing?” and he stated that I shouldn’t worry that this was normal for Kidney Stones and walked out the door to his next patient. Well over the next couple weeks things did not get better and the urine was getting darker and darker and the clots bigger and bigger ( I mean real big) Urinating was also becoming difficult. So I contacted the Urologists Nurse and told her what was going on. She advised me that she would talk to the Dr and see what he would like to do next. A couple days later I received a call back from the nurse scheduling me for a Cystoscopy.
During the week before the Cystoscopy, I was researching the procedure on the Internet. Most people stated that it was a little uncomfortable but no big deal. Well my Urologist put my feet in the stirrups and then lubed the cystoscope. Then without any numbing or disinfecting of my parts, he started to push the scope into my urethra. Well the burning and the pain were too much for me to take, and I asked him to take the scope out of me. He did but seemed aggravated and said because I couldn’t take the pain he would have to put me under.. He said his surgical nurse would call me (She did not call for three weeks)
During the next week, I found a new Urologist and fired my old one. The new urologist scheduled me for the Cystoscopy at the hospital within three days.
The Cystoscopy Procedure took place without too much of a problem. The hospital was great, but I woke up with a Number 24 French Style Foley Catheter in me. My Dr conducted a TURB (transurethral resection of a bladder tumor). He found the tumor while conducting the Cystoscopy and the Foley inserted in me to irrigate my bladder with saline solution. The Foley caused my bladder to be very spasmatic and those spasms really were painful. I remember having the nurses tell me to relax and let them pass rather than tighten up my bladder muscles. Other than the spasms, I had very little pain. The Spasms would come in waves, when I least expected it and caused me great discomfort. I also was afraid of moving too much as my Foley would pull a little and that also was uncomfortable.
So after, a full night in the hospital, the next day (early afternoon) my IV and Foley were removed (ouch) and I was allowed to go home. Before leaving the Dr stopped by room and informed me that he was shocked to find a tumor in me, and showed me the before and after pictures of the bladder. He provided me with antibiotics and pain meds, and advised me to take it easy for the next couple days. He told me he wanted me to get another CT of the pelvis done along with a barium swallow, and then schedules an appointment for an office visit the following day.
A day later I had the CT SCAN, which was uneventful, and the next day, I anxiously went for my appointment. I had a feeling the news was bad, as he was taking patients that had appointments later than me first. My appointment was now his last appointment of the day and I knew something was up.. He then told me, that I had Grade III Cancer that invaded the muscle wall, but he was hopeful that the TUR took care of it. The CT Scan that I took the day before came back negative for any spread outside the bladder.
He also spoke about getting my bladder removed, but informed me that he wanted me to get a second opinion from another Dr. Also he wanted me to see someone who specialized in rebuilding the bladder with intestinal pieces or bowels where I could void normally through my urethra, instead of utilizing an external appliance. He kept saying I was too young for this to occur, and wanted to ensure that a.) my cancer got cured/removed and b.) My quality of life remained in tact.
So now I have made an appointment for my second opinion, which is tomorrow. I have also begun looking at alternative medicines to compliment the conventional treatments. I have a friend who was an Oncologist at Johns Hopkins who referred me to another Dr who provides effective alternative bladder cancer therapy treatments in my area. I am now on a regiment of noni juice, shark fin cartilage, and many different types of vitamins and herbs. This treatment is not to replace conventional treatments but to be used in conjunction with conventional treatments. My main objective is to save the bladder if at all possible and I am not sure how much time I have before I have to make the decision to