When it comes to disclosing medical conditions and potential treatments, we’ve learned the hard way that even when you think you know what’s going on, you don’t know it all. I understand doctors don’t have enough time to invest determining how a patient or patient’s family member will react to bad news and tailor their discussion accordingly, but it’s frustrating to learn that we didn’t know nearly as much as we thought we did.
After the scope of Terry’s bladder that discovered the cancer there, the urologist was very upbeat and optimistic about the procedures and Terry’s likelihood of going home the same day with no catheter. Standing beside his bed minutes before the surgery, we learned that not only was the cancer in his bladder, but was in the urethra, and running through the prostate. He is still confident that they will be able to get it all, but they will not be doing it the way Terry and I understood the procedure would be done. We both thought that they would remove a layer and send it to pathology, and keep repeating that process until the sample came back clean. They will not. They will take all they think is necessary, and then that will be sent to pathology with results to be provided approximately 5 days later.
This means that he may potentially have to undergo longer chemotherapy than anticipated. He was told that he would just have the initial treatment after surgery to make sure they got all cells, but if the pathology report comes back with negative results, he will have to complete a more comprehensive treatment course with chemotherapy. It was also disturbing to learn that the cancer was more extensive than we were initially told. He knew about the malignancies in the urethra, and had briefly mentioned it to Terry at the time of the scope, but I did not know anything about it until right before his surgery.
I’m struggling to understand why there is not full disclosure by physicians about the real extent of what Terry will go through. The details always seem to come after the fact. They will let us know the possible negatives consequences of the treatment or procedures, but withhold details about what to expect when the treatment or procedure is completed. I’m sure there is logic on their end about what they’re doing, but from the patient’s standpoint, there’s a world of uncertainty enveloping them.
It also doesn’t help the wait for me while he’s in surgery to find out minutes before that there is more going on than previously revealed. It leads to questions that are not productive and makes the wait even longer and more difficult. In the vast and complex system that is the KU Medical Center they may have to tailor all procedures to benefit doctors and medical staff. But I will never believe that less information is the way to go. As long as I’m fighting for Terry’s health, I refuse to think less is more. It’s not.
