Thanks to everyone who posts for getting me up to speed and referring me to the best doctor. I do not even have a diagnosis yet, but Dr. Schoenberg at Johns Hopkins rearranged his schedule to see me tomorrow. What a guy! He emailed me back within 20 minutes on Thursday night, and Charlene had emailed me the next day at 6 a.m. and called twice by eight to get me in for a cystoscopy. I don't know whether to be impressed or scared!
Today, I get my cytology report from the local urologist. They are having their part-time pathologist come in just to get me the results in time for my appointment at Hopkins. The cystoscopy last week showed two growths and a red patch, and he wanted to schedule the surgery to biopsy in four weeks. My husband didn't like that we had to wait so long, and thanks to all of you, I figured I would email an expert and see what he thought I should do. Never in a million year did I expect he would see me, but I feel much better to have someone I completely trust and don't have to second guess.
I guess I am a little paranoid about doctors since my urogynecologist that I was seeing about my UTIs urged me not to have the cystoscopy, and didn't run a single test in the six years I've been seeing her. I also have high-risk HPV which has reactivated, and has caused CIN1 with endocervical gland involvement on my cervix. She wants to wait and see, but I think this is part of the reason that Dr. Schoenberg wanted to see me, so hopefully he can give me advice and a recommendation for a new gynecologist. He has written a couple of papers about HVP's involvement with bladder cancer.
Anyway, the question I have is what did your tumor look like in your first cystoscopy and were there more than one? Is it a bad sign to have multiple suspicious areas? My bladder lining looks smooth and healthy, but with two growths that look like molars! The red patch was oval and clearly defined. These were clear abnormalities, none of the searching the screen trying to find what the doctor was talking about. The nurse remarked that she had never seen anything like it before, which certainly wasn't helpful. However, given that they have an in-house pathologist, it seems like the nurses would have seen bladder cancer before, so I'm wondering if the tooth-like appearance of these growths is not what cancer looks like and they are some kind of obscure benign tumors or cysts. Maybe I do have molars growing in my bladder!
Thanks again for everyone's wonderful information and support.
Laura