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This topic is of interest to me and perhaps others.
For information purposes, does anyone have a general idea what the timeline is to move from one survellience/bladder watch stage (i.e. every 3 mos cysto) to the next (i.e. every 6 mos, 9 mos, 12 mos, etc).
I’ve read some material on the internet and postings within BCC website and there seems to be some inconsistences ranging from 6 months to 24 months (i.e. to move from every 3 mos to 6 mos).
I suppose each Uro would be different and no doubt each patient too based on path reports.
If you can share your experience, together with the cancer stage/type, it would be greatly appreciated.
Thanks.
Rick
Hi Rick! It seems to be a general rule to have 3 month cystos for 2 years, then if all clear for the 2 years move up to every 6 months for another two years and then graduate to annual checkups if you have remained clear. I was fortunate enough second time around to reach this milestone this past year. My uro follows this path but turns back the clock if you’ve had a reoccurrence or something needs to be monitored more closely. He let me graduate to annual checkups a little early because I’ve done a lot of BCG and have only had one very minor reoccurrence but that is on the promise that I will contact ASAP if I see blood in my urine. He knows He can trust me to be a good judge with my health. I sense that he orders more frequent cystos for those that will not or cannot manage their health closely.
I do not believe there is a definite guideline for patients. In talking to a few of the doctors on our Medical Advisory Board the norm would be 3 month cystos for 2 years assuming all clear during the period, then 6 month cystos for 3 years assuming all clear, then move on to annual cystos. This can vary depending on the stage and grade of the last turbt. Once the patient has a recurrence the clock starts from the beginning.
In my particular case I was every 3 months for 3 years and every 6 months for the following 2 years and then 1 year at 9 months and then annual. This was all my choice as my Uro wanted to move me to 6 month cystos at 2 years all clear and annually after 5 years.
JackI never graduated past three months due to recurrences over a 2 1/2 year period. And now, never again since they absconded with the body parts necessary to afflict such life-saving ignominy. As somewhat unpleasant as these scopes may be, they are relatively minor compared with more radical treatment and the whole purpose of doing them so frequently is to ensure that most people will never need more radical treatment.
Incidently, it was six years ago yesterday that I first saw my family doctor for hematuria and began this saga. Still alive and kicking!
Greg
I didn’t get past my first two rounds (3 months and 6 months) of BCG before having a recurrence. TURBT and then started over – booked for 3 months from the TURBT for a cystoscopy. At that point, 9 months from the first sign of CIS, my urologist suggested I might want to consider radical cystectomy, even though it appeared that the CIS wasn’t muscle invasive. I had been dealing with recurrences (first TCC then CIS) for 4 years at that time, and I decided that I didn’t want to play with fire anymore, and would like the bladder removed.
A funny little side story. I had my RC/IC, and then sometime later got a call from the hospital about why I hadn’t shown up for my scheduled BCG treatment – I guess it was for the 12 month appointment. I apologized, but I have to admit there was a definite relief in knowing that there was no treacherous bladder to inject anything into anymore by then.
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