My name is Fred and I am a 70 year old male retired in the mountains of Western Maryland. I am quite active and in good health or so I thought until July of 2001.
I had been urinating more often and more slowly for awhile but I was in no hurry and it really was not a problem. Then in July of 2001 there was blood in the urine. I went to my primary care physician Dr. Rapp (who I have great respect for) and he gave me antibiotics and sent me to the hospital for a urine check. The blood disappeard in two days but the urine test was negative so my doctor decided we needed to look further.
I live in an area that has a small hospital and one urologist and one oncologist. He directed me to have an IVP and then go to the local urologist. He did a CYSTO in his office on August 30 and found an enlarged prostate and several tumors. He then had me go to the hospital where he did a TUR on September 27. He removed some of the prostate and removed the tumors and took biopsies of them.
The biopsies showed TCC, superficial, high grade, not muscle invasive – (one CIS) – and the prostate free of cancer. The worst tumor appeared to be located at the junction of the urethra and the bladder and had been covered by the enlarged prostate . He flooded the bladder with Mitomycin and kept me overnight in the hospital. He then wanted a CT scan which was done October 9. Then he said that it was hospital policy that I see the oncologist before he could do any other treatment.
By now I was reading a lot of info on the web and especially the Bladder Cafe which has been of great help. The oncologist directed all of the radiation and chemo performed at the local hospital. He seemed to be very vague on his work with bladder cancer so I asked for a second opinoin. I had two options – the Cancer Center at West Virginia University (made famous on the bladder cancer front by Dr. Lamm) and Johns Hopkins Hospital. My wife and I (my wife has been my caregiver and I could not have made it without her great help and support) decided on West Virginia. It is much closer and and a much easier drive. We really dreaded the drive to Hopkins which is in the center of downtown Baltimore.
I met with Doctor Hogan at West Virginia on November 1. He was the oncologist who specialized in bladder cancer and also was head of the Cancer Center. He carefully considered the info available , the pathology showed that the tumors had not invaded the muscle layer , and decided that BCG+interferon was an appropriate treatment. I remember clearly that he said he was not sure if such treatment would work and he had his fingers crossed. My local urologist did these treatments so I had 6 BCG+interferon treatments ending on December 17. I then had another TUR on January 16, 2002. After the procedure he told me that there were tumors but they were small and he thought that things looked good after the six treatments.
The next week I called about the biopsy reports and got a very upset Doctor. He said that the biopsy showed the tumor that was at the intersection of the bladder and the urethra had gone into the muscle layer and that I needed to get back to West Virginia VERY quickly. He told me that when he did the first TUR he might have missed getting a good biopsy on that tumor because of all the prostate gland he had removed. Dr. Hogan at West Virginia wanted a CT scan and a PET scan which was done on January 30. My education continued when I met with Dr. Hogan on Februray 1 and learned that the scans showed POSSIBLE cancer spread. Both scans showed indications that should be further investigated. The bottom line to be learned is that these tests are helpful tools but have gray areas when the data is considered.
Dr. Hogan decided that the time had come to take stronger action and he thought it best if the bladder was removed but thought that chemo should be done first just in case there had been any spread so I started on a series of chemo treatments using Gemcitabine, Paclitaxel and Cisplatin as the main chemicals. I found the nursing staff at West Virginia to be the best I have found any where . As the treatments progressed I became sicker after each one. I had the common reactions – all the usual digestive tract problems, fevers , hair loss, lack of energy and depression. The worse problem that developed was periods of weak and rapid heart beat that made me very faint. I became nearly comatose after my 7th treatment so they stopped things there.
From talking with the nurses I learned some news vital to me – the recent departure of Doctor Lamm had left a huge gap in the urology group. Also the experienced surgeon that had done the bladder removals had developed colon cancer and had just retired. To complete the destruction of the urological group my oncologist was also leaving on July 1. It is interesting that his destination was Mayo West , the same place that Doctor Lamm went to. For practical purposes what had been an excellent Urology staff at West Virginia was at least for now decimated. I decided that it was time to move on so I found the Brady Urological Institute on the web (Johns Hopkins) and gave them a call.
I made an appointment to see Dr. Schoenberg on June 18. I had another CT scan and PET scan done on May 29 and they seemed to show no cancer any where which was certainly interesting. I gathered all my records for Hopkins wanted them hand carried to them. For people from the quiet countryside like my wife and myself the drive to Hopkins is difficult but we made it. Of course Hopkins is a huge place and quite different from other hospitals we had been at.
After meeting with many people we met with Dr. Schoenberg. He reviewed the material presented and quickly decided he wanted an MRI and a TUR done. It took a few weeks for my local doctor to get my heart regulated with beta blockers but that was successfuly done and I had my TUR on August 15. Dr. Schoenberg certainly is an amazing man – talented and caring . He had some papers to sign before the procedure so he came to my prep area and got the paperwork done . Then he pushed my gurney to the operating room. Along the way he kept receiving a constant stream of happy respectful greetings and gathering people so we entered the operating room like a triumphant parade.
The people there led by Doctor Schoenberg rebuilt the operating table as I was placed on it. They asked me if it was okay to use another anesthesia instead of the expected spinal. I agreed and apparently I immediately was out totally for a few minutes(something through the IV). When I came to I was heading for recovery. Dr. Schoenberg was quite surprised (as was I) that he found a "pristine" bladder. He did take a biopsy. A few days later I talked with Dr. Schoenberg and he said the biopsy showed no indication of cancer.
Apparently right now I am cancer free. I have another cysto scheduled in three months. Some of the present chemo treatments are quite new and no doctor can accurately predict when the cancer will return. I would be glad to discuss my experiences with anyone interested. My email is