Help! I'm Shragae's sister - a menopausal woman who -- until January, was relatively healthy. My GYN found a lump which turned out to be large (lemon sized or larger) tumor at base of my bladder - under muscle wall. MRI, board-certified urologist led me to top doc who did TURBT and mistakenly said tumor was outside vs. inside bladder (cuz it wasn't on top of muscle) and sent me to gyn. oncologist - who then laparoscopically went in and "VOILA" it was and is inside my bladder. His biopsy said benign, but... then I began for first time to have symptoms: pain, pressure,intense urgency and then passing blood in urine and bloody liver-like chunks of tissue. Unable to sleep as I'm up all night peeing. Was told to wait to see if "fibroid" shrank as I'm mid-menopausal. New MRI and symptoms led me back to top doc who scheduled another TURBT. Day I showed for procedure, he sent me home - saying I had infection. Insisted I see infectious disease pro/MD but none could see me. I was very upset, emotional and he called to say I had to not call or email his staff or he would insist I see another Dr.... He then put me on anti-bioticis and did another TURBT. While I was in recovery, top doc said he thought he could now remove transurethrally and would get me in right away due to infection, symptoms and serious blockage. He let me have catheter for two days -- the only good nights' sleep I've had in six months. He told me to follow up with his surgical nurse to get on his surgical calendar asap. I emailed her once then twice and called and left two voicemails. No one called me with biopsy results. One week after surgery, nurse emailed me and cut and pasted biopsy which I don't understand. I "appears" to be benign despite all the cancerous symptoms. I appear to have major infection, inflammation. Duh! My urine is backing up and I have a blockage and have to strain all the time. Then, the scheduling lady (not a nurse) tells me the operating room I need is not available for more than a month from my TURBT - nearly a month from the call date. I freak out!!!
I cannot endure that long. I begged for an earlier time and was assured I'd get a call by the next day. No call. I called and was told they were working on it. No email. No call. And now it's the weekend. Meanwhile, I have nothing to help the pain and symptoms but the over the counter meds a stranger, nurse recommended tome in recovery. No real relief and I now pee ORANGE. My top doc thinks I'm a pain-in-the-ass. I am at the end of my rope. How can I get through to my top doc that I need him to step up and "make good" and help me --? Had he done right by me in January, I wouldn't be in this mess. I know I don't apparently have cancer, but I am suffering and feeling desperate.
I forgot to mention that my doctor's visit before the 2nd TURBT was a 2 hr. wait followed by a 1.25 hr wait for labwork and a 1 hr. wait for the pharmacy.... Is there no more concern or compassion for patients? When I'm with the top doc, he's very nice, but when I'm not there -- it's Out of Sight, Out of Mind...
