Thank you Cynthia!!
I am in Michigan located between Grand Rapids and Lansing, but my insurance will only pay for Dr's in the Lansing area. I guess I should give a little more background. Way back in 1990 I was diagnosed with Juvineal Granulosa cell Ovarian Cancer. It is a very rare form of ovarian cancer (
emedicine.medscape.com/article/254489-overview). It was diagnose after I had surgery to remove a 6.5lb tumor and my left ovary and fallopian tube. I received the news about 6 weeks after surgery as it took them that long to determine that is what it was. There was no chemo or radiation, just frequent check ups that dwindled over time. It can recur many years later.
In the mean time my dad was diagnosed with non-hodgkins lymphoma, and then hodgkins lymphoma and fought for 12 years before passing away in 2009. My brother was diagnosed with Esophageal cancer and fought it for about 9 years before losing his battle in October of last year. My sister was diagnosed with Thyroid cancer and my other brother was diagnosed with kidney cancer, both are currently cancer free. My youngest sister had so many abnormal cells on a pap that they told her she would have cancer in less then a year and did a complete hysto on her a few years back.
So I do know battles can be won and lost. I have read up on bladder cancer, and I see that the 5 year survival rate is good!! I have also seen that recurrence is frequent.
I guess I am just frustrated at this point that my ducks are wandering all over and not lining up yet (bad duckies)
Between what I feel is lack of information from the urologist, all the unanswered questions and what feels like a constant burning from a UTI caused by the fistula that will not be fixed for well over a month, I'm not getting much sleep. I know that is not helping my stress level at all.
As far as getting a second opinion on the cancer. I did see the Pathologist report and see that it was also examined by a second pathologist. So I don't have any reason to believe that it is not cancer. I guess the treatment on the other hand could be where a second opinion could be handy. That is actually one of the questions I have for the Dr. I see that doing a dose of intravesical chemotherapy at the time of the TURBT can reduce recurrence rate by up to 40%. I am wondering if this is something he plans on doing.
As I said he has discussed nothing with me other then to tell me that they would "shave" my bladder (his words not mine) to remove the tumor and surrounding tissue.
Again I appreciate any thoughts, suggestions or comments!
Paula