Wendy, it is true there are many things to consider before deciding on watchful waiting vs immediate surgery. It has been my experience, however, that my former urologists created the anxiety to have the tumors removed immediately rather than my own desire to have yet another surgery. Because I did not have studies to which to refer at the time, I was not able to make an informed decision against immediate surgery. Now that I have that information from reputable medical institutions that have done long term studies, I am helping to educate b/c patients and medical personnel on the possibility of giving the patient choice of watchful waiting vs immediate surgery. I am glad to have this alternative and possibly others will feel the same. Thanks
Not many people are aware of the controversies surrounding much of bladder cancer treatments, which are evolving all the time.
One thing for sure is bladder cancer has more than one form. Aside from the very obvious differences in a primary superificial tumor vs. a primary invasive tumor, the term "superificial bladder cancer" doesn't pin down the differences between a T1 tumor, CIS and a Ta, low grade tumor.
There are large differences in risk. There's risk of recurrence, which probably won't kill anyone with a Ta, low grade tumor, and there is risk of progression, something that could be fatal. As you know, Ta, low grade/Grade 1 tumors hardly ever progress.
Repeated TUR surgeries cause permanent damage; removal of low grade, non threatening tumors comes with a price. But not many people can live with the idea of having a tumor in there; doctors understand the anxiety that this brings and give people the treatment they want. Sometimes it's too much of a good thing.
Re-education is the key. There's much to know before being able to make a decision on this issue and be able to live with it, both literally and figuratively!
I am currently doing watchful waiting monitoring of my present superficial recurrence first seen in February 2006 and again June 2006 rather and rejecting yet another TURB. I now feel confidant spacing the cystoscopies further and further apart and declining surgical intervention. After five years, 4 recurrences and 3 TURB's; information of 2 long term studies provided initially by Wendy Sheridan; additional research, information and monitoring my own recurrences, I am convinced the frequent invasive cystoscopy, surgery and the stated risks involved, post surgical discomfort are more of a threat to my health and life then my papillary superficial TCC at this time. You can read my story and update on Tales from the Trenches under Rosie. I would be glad to communicate with anyone interested in this approach. Rosie