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Damsel in Distress In Need of Advice

12 years 2 months ago #19361 by Patricia
Perhaps top doc does not know what scheduling people are doing? The fact that he did say to get you scheduled for surgery ASAP he should have relayed that to his OR nurse....so obviously there is a communication problem.
If you get to the point where you are passing liver sized clumps of blood and having trouble peeing...go to the E.R....Maybe the cameras will be there as they are now on network television every Thursday night at l0:00.

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12 years 2 months ago - 12 years 2 months ago #19359 by Gene Beane
Hi Damsel,

Your situation is confusing, but I have compassion for you as you have had very bad repore with this surgeon. You have had 2 turbs, after a turb the surgeon should be able to tell you if you have bladder cancer or not and the stage, with diagnosis, I still haven't heard any of that, I have heard blockage,,I feel for you as they have you all worried about what??? AND i SAY WHAT??? again. If you have bladder cancer I would insist on seeing this Doctor NOW!!! This has been going on to long!!!! Boy I just can't believe it, BUT I DO!!!! Like you said now its the weekend, get on it Monday if you have to sit in his office and get some answers, FIRST,,,DO YOU HAVE BLADDER CANCER?
Second...will you loose your bladder
Third...what stage is it
FOurth..if not b/c, what is it..

I would jump on a plane and come to the Cleveland Clinic, Dr. Stephen Campbell and Dr. Gill,,,you need anothe ropinion, its your life he's playing with.. My husband spent the nite after two turbs, not 3 hours, and a wait at the pharmacy,,,Can't believe it!!!!

Ginger Beane

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12 years 2 months ago #19358 by Rosemary

I'm very confused. Am I to understand that you still have a bladder tumor?
Do you also have a fibroid? Are your voiding issues coming from a fibroid or a bladder tumor, or both? Is your infection vaginal or is it urological? What kind of Doctor do you really need to see, a gynocologist or a Urologist?

Would it help to go back to your Gynocologist and see if you can get him to bend somebody's ear about your voiding issues????

When you say your tumor was "benign" what does that mean???

I'm as confused as you are, but, maybe if we can sort out some issues, we can think of a next step...

Hang in there. I know what menopause is like....:woohoo:


Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 2 months ago #19357 by SavvyPRpro
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!!! :ohmy: 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.:S
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... :angry:

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