Just surfing the web for information and found this site which seems a decent resource. I am sorry I dont know all the terms yet please bear with me,
So far, off and on again HEAVY bleeding for the last 11 or so months, CT showed abnorma; mass on anterior wall of bladder, a Uro scoped me "nothing" not a fun test which caused extreme bleeding for more than 48 hours. Then last month again due to heavy bleeding now with pain another CT same result. Referred back to Uro but he had retired (good in my opinion) so I saw a different Dr in the same office. I was again scoped (only heavy bleeding for 12 hours this time, who-hoogo team) and he said "you have cancer", in regards to my CT he said "I could'nt get my machine to read it", "I dont need to see it", "it wouldnt make any difference" . I am scheduled for a cystoscpy (sp) on Feb. 16 in Cookville TN.
Now what really bothers me most is my Uro's office (and the Uro) "dont have time" to provide any information to me, I mean none. They know of no support groups for patients or familys/providers, they could not suggest any resouce for bladder cancer information, none. When I asked about the Internet for information they said "not to read any of that stuff" Uro got rather pissed when I asked how many of these procedure he had done, on and on. Pardon my grip please.
Hopefully by the end of next week I will have lab results from the scraing procedure back and will post again then.
Any links to information, advice, other would be most welcomed.
Thank you,
JB