I thought it might be time to start recording here my experiences with this disease, before too much time goes by, and so I have as fresh and accurate a baseline as possible to come back to, myself, for reference.
I served 21 years in the USMC, retired to San Diego where my wife completed her doctorate in clinical psychology, and then we moved to our current home in Istanbul, Turkey, where she was born. I lived a life of clean habits and pure thoughts characteristic of the typical US Marine infantryman, with the exception that I smoked cigarettes – heavily. Probably 2-3 packs/day for pretty close to 30 years. I quit, using the welbutrin (Zyban)/nicotine patch regime, just over 6 years ago, and never had a desire for another cigarette since then. I’ve enjoyed the benefits of that success, but the consequences of the preceding period of heavy smoking seem to be coming home to roost – in my bladder.
On Saturday, May 27th of this year, I suddenly experienced heavy hematuria, beginning in the morning and continuing all day. I didn’t tell my wife about it, because she had just lost her father two days earlier – one of the reasons we came here was to help look after him, as he had been suffering from a debilitating condition for 5 years. I didn’t want to burden her with another worry before knowing whether it was really anything to worry about. That night, I hit the internet, searching on the terms "blood urine" and was struck by the advice I saw indicating that I should get an appointment right away, and if one wasn’t available, go to the emergency room. I don’t generally pay much mind to aches and pains, and don’t take much alarm from physical ailments, but neither am I the sort who resists seeing doctors. I don’t get panicked by stuff like this, but I am sometimes concerned that my apathy can result in my overlooking something that deserves attention. So, I thought about it, and decided to head to the hospital. I snuck out of the house after my wife and her mother had gone to sleep, and went to the emergency room in the early hours of Sunday, 28 May.
I was seen immediately, gave my history and described my symptoms, and the ER doctor ordered an ultrasound. It’s the first one I’ve ever had. The worst part was getting ready. I had to stand near one of those water coolers that produces both cold and hot water, mix them into a cup, and drink the warm water until I had to go real bad. It was pretty sickening, but I soldiered on for about an hour. Every now and then I tried to convince the nurse who was assigned to keep me honest that I was ready, but she employed interrogation techniques that penetrated my fraud every time.
Finally, carrying a heavy ballast of roiling, tepid water, she led me, pitching and yawing, down to the u/s room. The doctor there was very friendly and talkative, aiming to reassure me throughout the process. He explained what he was doing and finding as he went. He found a small kidney stone in the left kidney. He then moved to the bladder area, went quiet, and seemed to be spending an exceptional amount of time on one particular area.
A few minutes later I was back in the ER doctor’s office, where he went over the report with me. He explained the possibilities for my hematuria, including the probable meaning of the mass in my bladder that alarmed the u/s doctor. He made the next available appointment for the senior urologist in the hospital, which was on Monday. I wound up changing that to Tuesday, because based on my wife’s schedule, it was easier to continue concealing the matter from her, which I still wanted to do until I spoke w/my urologist.
The urologist did the usual exam, including a prostate check, reviewed my story and the u/s, and announced his diagnosis of TaG1 or G2. He ordered a TUR for the following week, Thursday, 8 June. Now, for anyone reading this who has been irritated with me for concealing the issue from my wife, you should know that I was roundly scolded for this by my urologist. "It’s none of my business. . ." – that was his concession to my being an American – "but, . . ." – then he gave me a full dose of a Turkish doctor telling his patient what my proper course of action was. It only seemed prudent to mollify the doctor who would be performing my TUR, so I told my wife the next day.
The TUR went fine, and my doctor was very pleased (although the catheter was extremely uncomfortable, my muscles never accustomed themselves to its presence, and no medication helped – even, after the first use, a morphine derivative). He said he had gotten it all, what he saw provided strong initial confirmation of his tentative diagnosis, and it appeared that there was a high likelihood that we would only be doing quarterly cystoscopies for the time being, but the pathology report would provide the final confirmation.
It didn’t. It came back Ta and papillary, but also G3. That changed everything. He said the tumor had had a wider base than he liked (the pathology report said 2 cm, but he said they sometimes get that wrong, and it was closer to 3 cm) but he hadn’t worried about it because it looked to be a low grade. Now that it had come back from pathology as a G3, he said we were going to have to do another TUR to take a more comprehensive pattern of material for biopsy, perhaps even a "scoop" across the base of the (removed) tumor.
This meeting was on Tuesday, 13 June. He wanted to let my bladder recover from the first TUR, so we scheduled the second TUR for 12 July. During the recovery period from that, both my doctor and I will be going on vacation. Then, in mid-August, we will begin the 6-week BCG immunotherapy.
After the consult with the doctor, I considered the situation. It seemed a bit contradictory to me that there could be a bladder tumor that was Ta on the one hand, and G3 on the other. I thought that G3 pretty much reduced the odds that it would be so benignly located. Based on my internet scans, I had also understood that on discovery of a tumor of this sort, I would go straight to BCG tx; I was a little puzzled by the second TUR, wondering if that meant that the doc was policing up something he should have done at the first TUR, such as taking more biopsy material.
So later, the same day of the consult, I joined this forum, and I posted those questions. I immediately got intelligent, frank, and informed responses telling me both that it was not a particularly uncommon diagnosis, and that my doctor’s actions were not only appropriate but indicative of a conscientious and prudently cautious urologist. A few days later, I also was able to do a telephone consult with a urologist at a highly regarded Navy medical center in San Diego, who confirmed that assessment, indicating that my doctor is doing exactly what he would have recommended. I will be having a face-to-face consult with this Navy doctor during my vacation to the States early next month, taking everything from my u/s results to the pathology reports for both TURs.
Access to the military medical system and to this forum pretty much consititutes my access to considered experience and expert second opinions. I may be being unfair, but my overall concern is that the medical community here in Turkey, while generally quite good – and the segment of it to which I am fortunate to have access is world-class – does not afford the range of clinical experience and diversity of expert opinion that is available in the US. I want to have that, so I can be more comfortable that I have been given the opportunity to be informed of and consider all reasonable alternatives. I have to say that the participants in this forum are the key element of my reassurance on that score. Having the access I do to Navy medicine is the capstone.