A Personal Account of my medical condition from the onset through the progression to the diag

By Robert Sommers

I retired from law enforcement in 1990 at the age of 48 with my whole life ahead of me. At that time, I had no big medical problems to hold me back. All that changed in July, 1997, when I went to my family physician with a complaint of blood in my urine. At that time, I was only given an antibiotic to combat a possible infection of the urinary tract.

A few weeks later, my wife of 31 years and I were in Boston on an annual vacation trip. We had walked about 12 hours in one day seeing all the historical sights in Boston. The second day was going fine until about noon. I discovered a large amount of blood in my urine and feared that the previous condition had worsened. It only took us a few minutes to make our decision to return home so my wife would not be stranded in Boston alone – it was obvious I had a serious problem which would require treatment. The fifteen hour drive home was a long fifteen hours!

Again, I went to my family physician on July 31, 1997, and related to him the incident of the large amount of blood in my urine. He referred me to a Urologist this time. On August 20, 1997, I went through a Cystoscopy and Retrogrades procedure. A dime size tumor was removed from the bladder and was diagnosed as a Low Grade Cancer on the Inner Wall. We were told that this type of low grade cancer was 80% curable with treatment. A nine month period followed ending with a checkup which showed a Red Irritation Area – Negative Test for Cancer Cells.

May 22, 1998, I was admitted to the hospital for a biopsy surgery for the red irritation area. The results came back Positive Cancer Cells-lnner Wall of the Bladder.

My doctor started me on BCG treatments (tuberculosis germs). At first, I was required to take six treatments once a week starting on June 23, 1998. The Urologist just gravity fed the BCG into the bladder via the penis and then you go home, allowing it to remain there for two hours. I would walk or move on my sides and back in order to coat the whole inside of the bladder. You should never just sit around and wait out the two hours. The procedure is pain free and only takes a few minutes. Another set of six treatments started on December 7, 1998.

During the above times, my urine was tested frequently for cancer cells. The test results would come back inconsistent – "Negative Cancer Cells", "Saw Little Redness Area", "Positive Cancer Cells", "Inconclusive Result", "Couple Cells Suspicious", "Bladder showed rough area, a little red spot". I’m sure the doctor was just as confused as my wife and me! At times the test would be clear of cancer cells and other times the test would show up Positive.

Beginning in September of 1999, I then went through two more Biopsy/Cystoscopy surgeries of the bladder and some treatments using Mutamycin (Nitomycin (20mg) – Mannitol(40mg)). Same results as before – No Cancer to Some Suspicious Cells.

The January 26, 2001, urine test came back as Conclusive Positive Cancer Cells. I would have preferred that the report came back as Conclusive Negative Cancer Cells, The uncertainty was very stressful for my wife and me. The affected area remained in the inner wall of the bladder. My Urologist then referred me to the Ohio State James Cancer Center in Columbus, Ohio.

On February 19, 2001, my wife and I went to Ohio State James Cancer Center for a consultation with my new Urologist/Surgeon. An IVP (Intravenous Pyelogram) test was scheduled for examination of the Kidneys – Ureter Tubes – Bladder. I was to return in about a month.

On March 30, 2001, I had a Biopsy, Cystoscopy, Bilateral Retrograde Pyelograms, and they took some samples from the Ureter tubes. These test came back looking really good, no cancer cells with a mild dysplasia area, and was examined by the Department of the Peer Review Panel. We followed up with a couple more Cystoscopy examinations with mixed results. One was Normal – No Cancer Cells, and the other showed Abnormal Cells.

On December 19, 2001, another Biopsy, Cystoscopy, Ureteroscopy was scheduled. Everything looked OK. Was given some Chemo following the biopsy and told to hold it for two hours. That was a very hard thing for me to do at that time, holding the Chemo for two hours! I was moving all over that chair trying to hold it! Later, I found out that the urethra tube was blocked off and I could not have gone even if! had tried! I could have relaxed and talked to my wife in those two hours had I known!

On March 4, 2002, another Cystoscopy examination. The last biopsy came back Positive. The Urologist talked about the necessity of removing the bladder. That was very bad news for me. I had been fighting this problem since July 31, 1997, and now I am told my bladder had to be removed!

On March 21, 2002, I had a Bladder CTS (chest ABD & Pelvis w/out contrast). The Cat-Scan looked real good; but the bladder still had to come out before the cancer spread to the surrounding lymph nodes and prostate.

On April 4, 2002, my wife and I had a consultation visit with the Urologist to sign the forms for the removal of the bladder and prostate and to re-construct a new bladder from the intestine (NeoBladder). The procedure is called a Bilateral Pelvic Lymphadenectomy – Radical Cystoprostatectomy with Orthotopic NeoBladder.

At this time it is important that you are confident that your Urologist/surgeon and staff are quite qualified in this area to perform this procedure of making you a new bladder out of your intestine. It requires 2 feet of your intestine to construct the new NeoBladder and up to a 7 to 10 day stay in the hospital. Even before this, YOU must decide if you want a NeoBladder or an Internal or External pouch. (I can not comment on the pouches since I do not know a thing about them). Ask your Urologist/Surgeon about how many surgical procedures He/They have performed on the particular procedure you decide on. Have your questions written out before your consultation visit and write down the answers for a more private discussion later.

You must have 100% trust in your Urologist/Surgeon to carry forth with the operation, recovery time and the many follow ups. My Urologist/Surgeon stated that he had done about 175 operations concerning the building of the new NeoBladder. Mine would make #176! My wife and I had all the trust and faith you could possibly have in choosing a Urologist/Surgeon. Besides his medical skills, he had very good bedside manners and a great personality in general. We believed all would go well under his care.

The day of the surgery, April 24, 2002, five years after my first sign of trouble, my wife is waiting in the atrium, my Urologist/Surgeon came over and shook hands with some of the people and telling my wife that surgery is over and all went well. She asked him, "Shouldn’t you be upstairs with my husband doing his surgery?". He replied, "He’s ok, they are only prepping him for surgery right now." He then proceeded to talk to some children in the room. A visitor asked her, "Who is that man dressed that way?". My wife said, "Well, he is my husband’s doctor".

The operation went well – it took 4 hours and 15 minutes. Surgery took place at 12:45 p.m. and my wife saw me at 7:25 p.m. in my room. She saw lots of tubes – 2 spaghetti tubes going into my side to drain the new bladder, 1 tube in the nose down to the stomach, 1 tube in the penis, and two IV connections in the neck area.

The very next morning I was getting up for a short walk. However, when the Aide was helping me out of bed – the two drain bags dropped to the floor. Boy! Did that hurt and continued to hurt for 1 1/2 hours. That never happened again – I pinned them to the hospital gown! For the first day or so, getting in and out of bed was very difficult and getting into a chair was not easy either. Since the nose tube was still in – you can not have anything to eat. I got hungry! The nose tube was removed on the 4th day. My wife had been kissing me for the past 4 days and did not even notice the tube missing when giving me my kiss! What a wife!

Each and every day you can walk a greater distance around the hallway and on one occasion I had to be returned to the room because I had a wonderful and long awaited urge to go to the bath room. The Nurses said, "IT’S A CELEBRATION!" It is a good sign when you can go! I kept wearing out the carpet from walking so much. Once I was out of the bed, I really did not want back in it. Each day the pain was less and less as I moved around.

On the seventh day, the nurses started to remove two little tubes in my right abdomen area that were draining the 2 kidney tubes (direct drainage). Only one Suprapubic Tube (cath) still remained (on side), and one Foley Tube (cath) remained (in penis). The Suprapubic Tube is the last tube to be taken out (it is a back up tube while you use the catheter for drainage). The nurse gives you lessons in Self Catheterization. I was cut free from the Suprapubic Tube and it was plugged but still hanging on my side. As the days pass, you are relieved of all the connecting tubes and you feel so much better knowing you can walk around and move about as you please..

During recovery in the hospital, you must do muscle exercises to hold back the urine. Also, you use a Voldyng, a breathing tool, to rebuild your lung capacity. The goal is to do 10 puffs per hour during your stay keeping the little yellow float on the "good" "better" and "best" marks. On the tenth day, my Urologist/Surgeon came into the room to see how I was doing and I said, "I want out of here!" He signed my dismissal, the Suprapubic Tube was removed, and I was finally checked out. I went home without anything being attached to me.

Your wife or another loved one needs to be with you. It is really, really helpful to have someone from the family stay with you as much as possible at home as well as in the hospital. They can do so much for you when the nurse/aides are not around. And believe me – they are so busy with other patients that they cannot attend to your every need. I had a very good experience with the hospital and staff while I was there. Everything went so well.

You get introduced to Assurance Protective Underwear and Plastic Sheets for the bed. I was up 4-5 times to empty the new bladder the first night. I had to deal with my emotional strain at that time – will go one day/month at a time. Was up at 6:30 a.m. for a welcoming bath which felt really good. My wife put medicine on the Suprapubic Tube (hole). We are both very tired from the hospital stay.

Now comes the long healing time and waiting for your next doctor’s appointment. Self Catheterization and flushing is a must at least once a day and will continue for a year(s). At first – I was getting 250-300cc on average and twice at 750cc. Although your new NeoBladder is made from a 2 foot section of your intestine, the Intestine still produces Intestinal Mucous and is expelled by your urine; but this should not be a concern. Your mental attitude toward it will adapt. When I left the hospital, I was given Bacterium (Trimeth Sulfa Tab 400/8) to fight infection. My body reacted to these pills and I was unable to eat food. I was very, very nauseated from taking these pills and my weight loss continued so my doctor immediately took me off of these pills. For the next several weeks, I went through a series of improvements and setbacks in controlling my new man-made bladder but eventually I became dryer at night and had good control in the daytime. My appetite had returned to normal and am enjoying meals. During the second month I was able to use my abdominal muscles to make a bowel movement which I did even though it caused a slight pain. As the days go by, your body strength increases.

First six month appointment checkup – slight pain in the left side, body strength is good. Very little leakage during the daytime and a little incontinent at nights. Having good stream whether standing/sitting, getting about 100+cc at self-catheterizing. Everything looks OK.

For the next six months there are gradual improvements – I started putting on regular under shorts during the daytime; getting up only two or three times at night; continue to wear the Assurance Protective Underware at night; self-cath and flush every night; do not drink liquids after 6:00 p.m. As the weeks go by, I feel better and better and my mental outlook is positive.

I had a cat-scan which was OK. Everything was going along fine. I talked the doctor into letting me self-cath only three times a week instead of nightly.
The following six months I was not getting enough urine from self-cath to continue the process. I asked my doctor if I could just stop self-cath. The answer was not the one I wanted to hear! The doctor said that continuing self-cath is a must – to help prevent tissue scarring and the closure of the urethra tube.

18 months has past and I am doing excellent – considering. My 2 year appointment will be in April 2004.

In conclusion, I can truthfully say I would do it all over again! A word of caution here -you should have the prostate double checked and triple checked for signs of cancer before agreeing to the removal of the prostate if you want to continue a normal, intimate sex life with your wife. Having trust in your doctor and surgeon is very important, along with a positive attitude toward the end results. A good strong mental attitude will go a long way. My new Neo-Bladder works quite well. If you have the same success as I did with a new NeoBladder – you will agree – that the NeoBladder is the best choice?
I am a happy and blessed Cancer survivor!
The End