Adventures in BC land ....
Hello all ...an Update on my latest trip to Memorial Sloan Kettering .....
As I mentioned in my last post I have been more than a little apprehensive, afraid, scared, worried, sleepless, nightmarish considering my appointment with Dr. Herr on Monday August 13, 2007 and what he might find and or recommend. As anyone who has read my tomes knows I am T1G3..The borderline case according to my Florida Uro. I have almost no knowledge at all about bladder removal as even reading about it makes the aforementioned apprehension, fear, anxiety etc. even worse. So I have played Ostrich ....foolishly I know but that’s another dimension of my human frailty.
I have just returned home to Florida (on a fairly cheap Delta flight –thanks for the tip Pat) at about 5 PM tonight (Tues 8/14)
Here in lies the tail...of my Trip to MSK and Dr. Herr. My wife and I flew into Conn. On Sunday afternoon where my son lives and he picked us up at the airport and we stayed at his home that night and he graciously took time off from work and drove us into the Big Apple for my 11:30 appointment. (if you go leave plenty of time as even getting INTO the parking area is a traffic wait). Anyway we got there at 11:20 and went to the waiting room. I was told to give a urine sample which I did.
At about 12:30 my name was finally called and I was escorted to the cystoscope room by a nurse I recognized from my TUR and asked her if they used Blue Light technology. She acted shocked (and perhaps offended) that I would ask. She said “Where did you hear about that and why would you want to know? And are you saying you wouldn’t want to see a Dr. as wonderful as Dr. Herr if he didn’t have one?” By this time we reached the exam room where she told the nurse that was there “He wants to know if we have a blue light, can you believe it?”
This nurse then said “I’ll answer you but first you need to tell me where you heard about it and what it does?” So I told her I read about it on the internet and that I believed it helped to see cancer tumor cells that a regular scope might miss. She then confirmed that yes they do have it but implied they didn’t need it!
I then did the dressing gown, get on the table, put your legs in the stirrups, slide your butt down, “this betadine might be cold “ routine. My blood pressure was then taken (about 25 points higher than usual) as well as my pulse. As if on queue, Dr. Herr came the second the prep was done and said “How are you doing ?”. I replied “ah okay I guess “ and the next thing I know the nurse is telling him I asked about the “Blue Light” as he began to insert the scope. At that time I began to watch the monitor in deep fear I (or more likely Dr.Herr ) would see the beginnings of a new tumor. He then looked around in my bladder for about 20 seconds and said it really looks more green than blue and flipped a switch and the screen turned a greenish hue for 2 or 3 seconds and then switched back to white? Light. After maybe 15 more seconds he pulled the scope out and to my immense relief said “Looks Good-see me again in three months”. Dr. Herr was then taking off his gloves and said “Any questions?”. I said yes ...”What about BCG maintenance?” He replied “No maintenance just see me in three months” and walked out!
The nurse said to clean up and get dressed ---which I did and when I retuned from the dressing area the room was empty. I went to the reception area and made the appointment and asked to see Dr. Herr or one of his staff that could answer some questions. I was told yes but not for two or three hours and perhaps it would be better if I phoned in the questions. I couldn’t wait that long as my son (my ride) was missing his work so we left after making an appt for 11/12/07.
I must say I still don’t know anything from the urine test or even what to expect but I was VERY relieved to hear “Looks good” whatever that means.
MY question for you ...PLEASE HELP...Isn’t BCG maintenance recommended by most for me now? I had the two TURS, Mitomycin C after the first then my 6 week BCG regimen after the second TUR and then 6 weeks off until the Dr. Herr visit yesterday.
So what is recommended and what would you do?
Thanks for reading. And best to all,
Yosarian