47 year male with T1-G3 which required RC, turned into a T2a-G3
I am a 47 year old male in the mid-Michigan area. I work full time for the electric/gas utility as a supervisor and part time as a fire captain on a large call paid fire department in this area. For those unfamiliar with the concept a call-paid firefighter is essentially a part-time or volunteer, who does the fire stuff in addition to their full time job.
In April of 2005 I was teaching a hazardous materials class and was investigating the use of urine test strips to identify certain chemical characteristics. Urine test strips used in a very specific sequence can help identity the presence (or lack of) anthrax. As the fire department had experienced several of the “white powder” calls this was an interesting experiment. During the course of the testing, naturally the idea came up to use the urine test strip for urine. Imagine my shock when it tested positive for blood.
A visits to the family doctor the next day, who took a pretty dim view of the whole situation, not quite believing that I had urine test strips and not quite sure what to make of the blood issue. At this point I had not seen blood and would not see it for several more months. A microscopic check verified that there was indeed blood. A round or two of antibiotics to ward of a potential infection did nothing. More visits and a scheduled IVP, which was not real fun as I had a new nurse who I am sure had never done this before, 4 separate attempts to get an IV started left me less than a happy camper. The IVP was to look for kidney stones of which I had no symptoms, at this point I am very un-educated about the medical testing, and this will soon change. In the meantime I am testing for blood with my “Diascreen” test strips, they consistently show high levels of blood, I still do not see anything out of the ordinary, and I am looking very closely!
The IVP was negative, claimed the bladder/kidney was “clean” at this point I had done some internet research and found that bladder cancer was real possibility for me. A long 30 day wait for the local urologist. At my first appointment, basically he takes a medical history and indicates that I need to come back……in another 30 days. I was still ignorant about just how serious this was. July 4th passes and a few days later I see my first very small blood clot and I am introduced to a “cystoscope” at local urologist, no local anesthesia basically slides it in and in about 10 seconds said “you have cancer, I see about a dozen tumors”. I have heard since that many people at least get a local or something to settle you down when undergoing this. My mind sort of went blank after that. Surgery was scheduled about 3 weeks later after much cajoling and outright abuse from his scheduling nurse, it obviously was not a problem for her, she had a distinct lack of interest in getting this scheduled.
Surgery at local hospital was done very quickly; I found out later that it took urologist about 20 minutes to do the operation. Surgeon would not meet my wife after surgery, it is his policy not to, calls her on phone, tells her “it was no big deal” got to run etc.. Woke up with a catheter and terrible bladder cramps. Nurse gave a suppository which took about an hour to locate, cramps settled down, asked for one “to-go” she told me, no way this is a controlled narcotic, requires three forms etc, take Tylenol. Bad advice, cramps hit me once I got home a quick call back said more Tylenol, they will go away. To shorten this story a bit a family friend who had bladder issues (with same urologist) stops in and give me Pyridium , other than it staining everything in site yellow, to my relief it worked. So the “narcotic” turns out to be an OTC drug.
Nine days with a catheter that bleed almost every time I moved with a Foley taped to my leg. I had no idea that they made a Velcro band that would work with much less pain than the white surgical tape they gave me. Leg hair and white tape make a painful combination, nurse was real pleasant who hooked up urine bag, but I am also sure that she never did it before it. No clue what to do with Foley, no anti-bacterial ointment or any instructions on how to care for it. A few more calls to urologist nurse who was getting real tired of the calls, she said don’t worry blood is normal both in bag and outside of penis, this is not confidence building, but the urge is to believe the MD, they must know what they are doing…..not always! . Catheter pulled in office, nurse said it was inflated at least 3 syringes full, which sure felt bad, not sure if it affected anything other than the urge for the last nine days to urinate. Doctor walks in reading pathology report and says “folks you got a problem the bladder has to be removed” This was the same doctor nine days earlier who said “don’t worry, this is routine, nothing to worry a little BCG and this will be over” A lesson here about a premature diagnosis.
A week after that another meeting with MD, who suggests a second opinion, he calls University of Michigan in Ann Arbor and I am meeting with Dr. Montie three days later. Very calm, very reassuring and indicates that this is indeed serious, but we will do what we can and make the best decision we can. He assigns me to Dr. Khaled Hafez, another wonderful doctor, superb bedsides manner for an anxious patient. Her performs another TURB this one takes 2 hours, when I wake up they say the bladder is a mess, what happened to it and did you know that you only have a 125 cc capacity? (20 minute surgery is my guess). A little side note, I had developed adhesions in my penis after the first TURB at local hospital (more of the 20 minute surgery is my guess), fortunately Dr. Hafez repairs this problem during the TUR. More biopsies out-patient, went home with hospital supplied Pyridium which at least gave me some confidence an opposed to my local hospital. The surgeon Dr Khaled Hafez was wonderful, took time to answer questions explain everything, at this point I had located the Bladder Cancer Web Café and had a very good idea of what I was up against.
It was diagnosed as T1-G3 with CIS. Much discussion and after looking at biopsies it was decided to have an RC. This was because the tumor had invaded some of the vascular area of the bladder. Turns out to be the correct decision as the tumor in reality invaded into the muscle wall (T2a). Dr. Hafez calls the night before the surgery, just checking in with you, how are you doing? It is very nice to have a surgeon who has this level of care. Surgery was September 21, 2005. I remember in pre-op urinating thinking I will not be doing this again that way ever again. After two months of cramps I was more than ready to part with it. I had significant pain every time I urinated, in the end it was attributed to scaring of the bladder wall.
Surgery was not that bad, yes it was long, yes it was major, but I was sitting up in bed that night talking with my wife and the next day was walking down the hall. Spent six days in the hospital, the bowels awakening was the biggest issue and discomfort that I had. The surgery site was a bit uncomfortable, but not what I would call painful. In a teaching hospital you are visited by about ten doctors per day, once in the morning and once in the evening, I was extremely pleased with the level of care at U of M, really reinforced my opinion that I had made the right choice as opposed to the local hospital (the one that did not have a Velcro Foley band). Discharged six days later.
Returned to outpatient clinic about a week later to get staples pulled, which felt wonderful, really could start to move with them out and a week later had the Foley pulled which was three weeks post surgery. Managed to void using the new equipment that day in the office. Incontinent for a bit for a few days, within a week continent during the daytime 100%. Nighttime is more of a struggle; I have 4 straight nights of continence only to be disappointed on night five.
Pathology indicated that the tumor had progressed into the muscle layer which confirms the reason for the RC in the first place, had I waited I would have had a very different outcome. Fortunately the lymph nodes all 30 of them clear as are the margins. The Oncology department at U of M said to wait for chemo if ever. I still have a CT scan, CXR, Urogram to go through, which I expect to be a regular occurrence for the next few years. As I had a Grade 3 which proved to be quite aggressive I need to be watchful for a long time. Anyone diagnosed with a Grade 3 needs to be very cautious of any treatment; delay in my case of a few months waiting for an urologist to do a two minute procedure delayed my diagnosis. And two TURB’s did not find the muscle invasion. Still am puzzled why the wait, it took me longer to read the pamphlet on a cystoscope than it took for him to do it, two minutes at the most, for this I waited two months.
Returned to work on week seven, no real problems, intestines still a bit touchy, but no real problems. People’s perceptions are probably the biggest issue. I think that people have not heard of this operation they have no clue what to expect. Some think you are relegated to handicap status. I am trying hard to dis-prove this, walking constantly, working and returning to the fire department in December. I also plan on running in the St. Patrick’s Day race with my son (who is 17) and trying to make a decent finish of it.
Yes, it was a big deal but now that it is over it does not seem that bad. I felt worse after the first TURB. Couple of lessons, local urologists are not always a good choice, my local did not want to do nerve sparing, indicated that he had zero interest in that problem He could do it, but did not want to (took too long?). I had the nerve sparing which I am thankful for, it avoids more surgery later, and it sure is nice to be able to function without a pump, injection or other device. Second advice is to go to a large hospital that does many of these per year, what a difference in care between the University of Michigan and local hospital. A loving and caring spouse carried me through my more miserable times; I managed much better when she was with me as opposed to being in the hospital alone. I am also thankful for the many kind people on this web site that emailed me and walked me through what to expect. I had a very good idea of what was going to happen and what to expect. I spoke with one of them who indicated that it was his policy to give back to those who helped him through the endless questions. And in turn I feel the same way, this was not the end of my life, I am in better health, have a better relationship with my wife and just generally look at things a bit different after this.
For this facing this issue, feel free to email me, thanks again to all on this site who have helped!
Update, September, 2006: It has been more than a year since the diagnosis, and about 12 months past surgery. Life is good, daytime 100%, nighttime 99.5%, the only time I have an issue at night is when I work very long hours, other than that I do not wear anything extra. I continue to have good CT scans, dropping down to twice per year, just had a colonoscopy two months ago to check on some minor bleeding. Fortunately the cause was nothing serious, just your garden variety hemorrhoids. A possible problem for those with RC’s as you need to strain to urinate, that and a balky intestinal tract post surgery probably contributed to this problem. A urinalysis every few months which is so non-invasive I almost look forward to it after a year of pokes in prodding in areas of my body that I never thought possible.
I had the nerve sparing which I am also grateful for, Dr. Hafez work his magic in that area and all is functioning well. I shudder when I think of the first doctor who wanted to remove prostrate and said he had zero interest in pursuing the nerve sparing option. I am also thankful I went to a large hospital at University of Michigan. The level of care at that facility was heads and shoulders above what I saw locally. There are many fine hospitals, I am recommending anyone considering this, go to a place that does quite a few of these. There was nothing that I encountered in the hospital that the nursing staff and residents had not seen before.
I finished my degree (BBA in business management at Northwood University) during this adventure, actually took two independent study classes right at surgery time. I made it my goal to move past this and get on with life. That is not to say that I do not think about this every day, sort of hard to forget it when you are in the shower and see a fading scar south of your navel, or every time you urinate. But trust me, I am very thankful and am not complaining, far from it.
Dave, RC September 21, 2005