(26 July 2006 continued)
He also asked me if I had felt any pain recently on my right side. This, because he couldn’t see the orifice for the right ureter. He called in another doctor for his opinion, and he also asked me about the pain on my right side. I haven’t had any, so they suspect the path of the urine from the kidney is not obstructed, but the view of the ureter orifice is obscured by something, perhaps related to healing from the 2nd TUR. This second doctor also concurred that the formations at the resection site could be nothing, but were suspicious and needed to be looked at more closely. They decided to do another TUR before proceeding either with the BCG, or "a more aggressive therapy." They will resect the formations and do their own biopsy.
After the procedure was over, my doctor spent some time explaining the implications of his findings with me, and why the TUR should be done. He carries some weight in the operating ward, evidently, because a little while later he told me he had scheduled me for tomorrow afternoon. He also has ordered a CT scan, and hopes to get that scheduled later the same afternoon, while I’m still in the hospital.
This sort of resource – a urology department with a deep bench of patient-focused, knowledgeable, experienced and professionally collaborative doctors – is what I have been eager to have. While my doctor here says that my Istanbul doctor seems to have done everything right up to this point, I think it was clearly time, after the recurrence discovered in the second TUR, 5 weeks after the first, to move to a medical environment like the one I think I am fortunate to find myself in, now.
The question of which side of the TaG3 diagnosis will drive events seems to be gaining in prominence, and will dominate the activities of the next few days. I hope to be able to post further developmenst in a couple of days.
27 July 2006
Had the TUR today. Everything went fine. One of my urologists who participated in the surgery (whose last name is the same as mine – I’ve been hoping I could use that fact to order my own procedures, but it hasn’t worked yet) said before the surgery that they would resect the suspicous formations at the previous resection site, would look around carefully to check out the whole bladder interior surface, and would take biopsy material from random sites. Afterward, he said they had done that, and had also done a "retrograde pyelogram " in which they inserted a dye into my urinary tract through the scope and took an X-ray. He said it looked fine – revealed no concerns about any escape, and they cancelled the CT. Best of all, they removed the catheter in mid-afternoon, and discharged me.
Next is a follow-up on 7 August 2006, allowing my bladder another 10-day rest. Between now and then the pathology report will come in, they’ll call me with the results, and it looks right now that we will get a confirmation of TaG3. If the "suspicious" formations turn out to be recurrences or residual tumor, then we may have what one of the docs previously called a "more aggressive" treatment regime, but I was left with the impression that tx was going to be BCG or some augmented form of it.
07 August 2006
The pathology report came back negative for the polyps – not cancerous tumors – and the additional biopsy material continues to confirm the Ta side of the diagnosis. Supplied a urine sample to confirm that there is no gross hematuria, which would preclude starting BCG, because they wouldn’t want the virus, in effect, to escape through the blood stream into the rest of the body. There was none, but since they routinely do these on Mondays, I won’t start until the 14th.
At each BCG installation, I’ll provide another urine sample. On confirmation that there is no bleeding, and that I can take the immunotherapy, I’ll go down to the pharmacy, pick up the BCG for that day, then go back to the urology department to have it installed. They said I should keep it in for at least an hour, no more than two. After 6 weeks of this, I’ll wait another 3 months and have another cytoscopy.
The doctors were very positive, pleased that the polyps turned out to be neither a recurrence nor residual left over from the previous TUR, and they feel I am a good candidate for the immunotherapy. They said that if I come out clean at the BCG + 3 mo cytoscopy, then they’ll schedule cytoscopies every 3 months for a year or two to monitor the situation. Seems pretty optimal to me for the present, although there remains a strong possibility of recurrence, due to my initial grade 3 tumor and the fact that I already had a recurrence w/in a month of initial diagnosis.
The doctors’ optimism also makes me wonder if they’re thinking that the recurrence (of a "mini" tumor and some even smaller cancerous particles, all at or on the immediate perimeter of the initial tumor) that led to my second TUR was actually residual from the first tumor – they never said that, but it would account for their optimism and the absence of the degree of precautionary admonitions they had been offering previously about the likelihood of recurrence and of the potential need to move to a bladder removal/reconstruction procedure, or of some other form of "aggressive" treatment.
I will note here as well that my wife has been chastising me for not following through on my Turkish doctor’s offer to let me bring the slides of the pathologies done in Turkey. I was never sure how useful that would be, and had questions about the survivability/usefulness of the samples. In any event, at this visit on the 7th, she asked one of my doctors if there was a possibility that the lab in Istanbul had gotten the grade of the tumor wrong. He said that this was unlikely for two reasons. One is that the grade fits comfortably within the range of possibilities suggested by my non-controversial symptoms. The other is that he said that there is a lot of bladder cancer in Turkey, and that a substantial proportion of the journal articles in the professional urology publications originates from Turkish doctors, so there is no greater reason to be suspicious of the reliability of their work there than, generally, here.
Nevertheless, while I was always pleased with my Turkish urologist and hospital, we’re still also very pleased with our decision to move our treatment here. The urology department here is quite large, and I am being treated by a team of three doctors: the head/acting chairman of the department, the chief resident, and another doctor who must be their best, because his last name is the same as mine.
In any event, BCG starts this coming Monday. I’ll be providing an account of it, because I’ve never really seen a play-by-play retelling of what happens.
14 August 2006
The nurse who will be doing my BCG immunotherapy treatment called me last Friday morning to brief me on what to expect and how to prepare. She told me to avoid drinking fluids starting 2 hours before installation, and caffeine (including any food that contains caffeine) for 4 hours prior. The reason is so that the bladder won’t send signals to void during the 2-hour period the BCG needs to stay inside.
Showed up at the urology department at 0745 this morning. Provided a urine sample, which they tested to make sure there was no blood, which would indicate there might be a route for the BCG to exit the bladder and infect other parts of the body. There wasn’t any, so the BCG was ordered. Evidently, there is some sort of precautionary container or device, they called it a "hood," for the BCG once mixed, which the pharmacy chose not to use for some reason. So, instead of me going down to the pharmacy to bring up the mixed BCG, a pharmacist came up to the urology department and mixed the concoction there.
(continued below in the 15 August 2006 post)