My Dad saw the urologist today after having a urethral polyp removed last week. The pathology came back high grade TCC (T2). Surgery to remove his urethra is scheduled for next week. The doc feels certain that it is contained in the urethra at this point (pathology indicates this). He plans to do CT scans every 3 months after he removes the urethra just to stay ahead of the game.
When Dad had his cystectomy last year, the pathology came back with urethra margins clear. The doctor today said that some pathologists don't look at enough of the tissue to really determine if the specimen is clear or not. So, is this a recurrence or was it always there? Guess we'll never know that. End results are the same. However, stromal invasion of the prostate indicates high risk for urethral involvement, and Dad had this, but his original uro/surgeon still chose not to remove it.
Dad was just saying how good he feels lately and that every time he is feeling this good, seems he has to have an operation! The difference this time is that we have complete faith and trust in the urologist/surgeon. Believe it or not, the doctor himself called Dad with the pathology report and moved Dad's appointment up by two weeks. We're not used to that kind of great treatment, for sure. And, this doctor is rearranging his surgical schedule to get to Dad as soon as he possibly can.
We are hoping that this will take care of the cancer and that Dad will be cancer-free and back to feeling good again. I hope the same for anyone here faced with this or similar situations.
You have questions and you need them answered, and by the way you are very lucky to be working with one of the best. But the bottom line here is that it is your father’s life and he needs enough information to make an informed decision. My husband and I would sit down and write out our questions and he would be my secretary when we would meet with the doctors, we worked as a team. If I were you I would call the office and tell his nurse that you need to talk to him because you have too many questions to make a decision and you need an appointment to do that as soon as possible. Or you might go to the hospital website and check and see if he has an email listed. Doctors are human and busy ones at that it may be just a case that you need to say slow down and talk to me.
When we are talking about complex decisions about how a particular surgery was preformed we on this forum do not have those answers we are not doctors. But what we can do is be there for each other as we take this journey and teach each other how to be better medical consumers.
If you try this let us know how it worked, if it doesn't I am sure there is more than one way to get there from here.
Chin up and straight forward
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Sorry i opened a can of worms..
Geez...i had to actually go back and find my discharge summary to find out if my urethra was removed.......aaargh...it was!..Oh well..i guess i don't miss it?? I think its customary with females?
Indications for urethrectomy include the following:
Tumor in the anterior urethra
Prostatic stromal invasion that is noncontiguous with the primary
Positive urethral margin during radical cystectomy
Diffuse CIS of bladder, prostatic ducts, or prostatic urethra (a relative indication)
I don't believe i had any of those things as my final path report actually stated that i only had a few pre-cancerous cells floating around probably looking for a place to call home!...But they took it anyway.....maybe because i had an Indiana pouch and hey it wouldn't hurt to take another thing out??
I guess then my question is...if you have a neobladder, male or female, you must have your urethra right? And what about the external ileal conduit folks? Should we take a poll?
Is there a new MO out there for urethra removal after cystectomy?
I'm sorry for making you feel as if you did something wrong, please accept my apologies. You are just discussing your situation and responding to an honest question! I guess I worry too much sometimes and of course you're correct that even the greatest clinician can be remiss when it comes to communication. That is not what you need at this time, you really need some answers.
I'm afraid all I have are questions at this point. If not pathology or test has shown involvement, as Zach said, why put your father through a second surgery so soon.
I hope you get the chance to directly confront the surgeon for a satisfying explanation. Each case is different, perhaps there is a particular reason. If not, it's within your family's rights to question this advice..right up until you can make a well informed decision yourselves.
Take care and let us know how it goes.
I apologize for my follow up post mentioning a surgeon's name in response to the question that was posed to me, it was just an automatic honest response on my part.
There have not been tests since after the RC. We had been told that the pathology was clear, no chemo/radiation needed and that two follow-up visits at the surgeon's office afterward was the standard protocol. The initial visit went well and my father was told that he was doing well (post op 5 weeks) and that he could even drive if he wanted to. We were a bit taken back by that since my Dad had to be wheeled into the office and was far from recovered.
His second post-op visit resulted in being informed that a second surgery needs to be scheduled immediately. Replies to questions asked were either vague or nonresponsive. When this occurs, a patient can feel that they are being spoken to in an arrogant or condescending fashion and further feel intimidated or fearful of asking anything else. I am grateful that this forum exists when patients don't quite know where else to go to find the answers to their questions.
My opinion is that someone may excel in their field of expertise but it doesn't also make them proficient in communication skills.
I would like to remind us that it's not ok to name names of doctors and then complain about them on a public forum...so... please consider removing personal names, for your own safety, as this is against the law (and guidelines) and might get you or the forum in trouble.
That all being said, Steinberg practically wrote the guidelines! Emedicine.com is one of the best sites out there and he wrote their article for bladder cancer (there are many many other articles about TCC, upper tract, CIS, cystectomy, etc etc, highly recommended if you are looking for further info though it's for professionals and a bit daunting if you don't know the terminology yet.
It sounds like the surgeon didn't want to extend the procedure for some reason. It could even have been the choice of the anesthesiologist, who knows. Perhaps there was a frozen section taken to check for clear margins in pathology, and maybe the surgeon was told it was all clear.
Have follow up tests shown cancerous cells? cytology, FISH or other test?
What is the risk vs. benefit for having a second surgery. Let your father be convinced he's making the right decision.
The trend is towards removing surrounding organs or tissue only when absolutely necessary; newer studies are suggesting that recurs in the urethra are less common than thought, unless certain risk factors are present, then it's time to take the urethra as well. This goes for women as well as men. Men don't have to worry about getting the hysterectomy that was common until recently for female RC candidates. But if CIS was present, or involvement of the prostatic urethra was seen, these are 2 of the increased risk for urethral recurrence.
Perhaps pathology came back and made the doctor feel a more aggressive tack was wise. I wouldn't second guess someone like Steinberg, he's one of the best. But yes, stuff happens, the O.R. is a busy place.
If I were you, I would want to hear exactly why this is the best course to take, what risk factors were/are present to justify the morbidity of a second surgery so soon after a major RC.
I wish you and your father all the best, that goes for all of you out here on behalf of your fathers.