3 years 5 months ago - 3 years 5 months ago#50239by CatherineH
Wow... I'm kinda speechless reading this. I do hope the last news is accurate and you DON'T have bladder cancer. I'm sure this left your head spinning to say the least.
That said, this would make me lose all confidence in that practice. There was either mishandling or mislabeling of your records/slides, and gross incompetence on someone's part. Have you had a chance to talk to your uro yet?
I think I would call the specialist's office (who scheduled the 2nd TURBT for February) and see what he makes of this new development. I do hope you get things sorted out very soon, and that it all works out in your favor!
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
So, I have an update. I'm starting to feel like this is all some kind of alternate reality and I'm waiting for something, anything to make sense. But I won't be holding my breath. So my last procedure was a TURBT. My urologist had set me up to see a specialist, his second opinion in a sense. I met with the specialist on Tuesday. He reviewed my pathology and also gave me the results of my recent PET scan which showed hydronephrosis and hydroureter. The thinking is that this is caused by scar tissue forming from my last surgery. So the plan was for the specialist to go in for another surgery in February (won't I drown in my own urine by then?) to scrape my bladder and see what's causing the back up into my kidney. Okie doke, fantastic. Surgery is scheduled. The next day, Wednesday, I get a call from my urologist's partner, who I have never met, and he tells me that my urologist had sent my original tissue sample to ANOTHER pathologist (this would be the third maybe?) and apparently the tumor was benign, it was all a mistake, and congratulations?! My urologist had just left for break so that's why his partner was calling on his behalf and he'll call me when he gets back. WHAT?? I mentioned my surgery for my new problem and the doctor said they would have to discuss and get back to me. I asked what provoked the change in diagnosis. He couldn't tell me because he didn't have the pathology and he's not familiar with my case but my urologist asked him to call me so that I would know. I realize that this was only two days ago but I'm honesty wondering if I hallucinated the entire phone call. Is this even possible? I think I'm more confused now than I was a week ago.
I too was a ball of nerves when the diagnosis first came along. Let yourself cry, and take comfort from all that offer support. I also saw a therapist to help me through it and I found it very helpful. He gave me some meds to help me sleep which was very helpful. You will need your family and all you friends to help you through it. bUt you will get there, and you have us to listen as well.
Believe it or not, it does get better with time, when you have had the opportunity to process everything and deal with the "new normal." When I was first diagnosed with papillary bladder cancer, my thought was "now I know what I will die of!" And then, six weeks later, the diagnosis was expanded to CIS also.
Yes. I was upset. And then, both my primary care doc and the urologist suggested that I mightbe depressed. That made me very angry...didn't I have the right to be depressed?
Now almost exactly 8 years have passed since the initial diagnosis. I am alive and healthy. Now on yearly checks....and I do get a bit anxious as the annual exam time nears.
Don't worry about feeling anxious, etc..... You will adapt to this and will soon be counseling others!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank you, Sara Anne and Catherine. My doctor is certainly being thorough and I appreciate that. I guess I was just caught off guard when he wanted my second opinion to be anywhere other than at Dana Farber since we're just so close to it. I think growing up in the area also has a lot of us Bostonians conditioned into thinking that it's the only acceptable place for cancer care. I'll see what comes of all of these upcoming appointments and revisit options then I suppose.
Thank you again, ladies, and I'm glad you all seem to be doing well. I have to ask, how did you all deal with the anxiety? I'm a ball of nerves and my mood swings are exhausting. I find myself crying uncontrollably for hours at a time. And sleeping is next to impossible. I can't seem to focus on anything other than all of this.