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Second Surgery??? Is This Customary?
Posted by Caring Daughter on April 22, 2008 at 7:16 pmMy Dad had his bladder, one kidney and his prostate removed on 2/25/08. He is just beginning to get his strength back and acclimate to the urostomy bag.
Today he had his second follow-up visit at the University of Chicago. He was informed that he now has to have a second operation to remove his urethra. When the surgeon was asked why this was not removed during the first operation, his response was sometimes they take it, sometimes they don’t, and that he had so much removed during the 7 hour operation. He also said that my Dad must have his urethra removed as soon as possible because there is a 20% chance that the cancer can return.
My family is extremely upset at this development particularly because we had been told after the first surgery that no chemo/radiation or other treatment would be needed. That his lymph nodes were clear, etc. My Dad will be 79 years old in a few months. If he agrees to a second operation, he will have to repeat pre-op tests and again be put under general anesthesia and endure another hospital stay in Chicago (he lives out of State).
Is it just me or does there appear that an error was made in not removing the urethra during the first operation? Can someone share any thoughts on this with us?
Thanks, Debbie
harleygirl replied 16 years, 9 months ago 9 Members · 13 Replies -
13 Replies
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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.
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Debbie,
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
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietyGuestApril 26, 2008 at 10:43 pmSorry 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?
Found this….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?
PatI’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.
WendyHi Wendy,
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.
Hi,
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.
WendyI got a copy of the report written by my physician after my neo bladder surgery and learned that a small sample of my urethra was viewed at pathology during surgery. I also got a copy of the pathology report and learned it was normal tissue.
Recently I had a follow up appointment (nine months post op) and had to endure some new procedure where they scrape an area within the urethra and send off to pathology and also for fish. My doc has been working on a method of isolating this area for fish and or cytology tests, saying this is an area they sometimes see recurrances of TCC, as the cells that line the urethra are the same as those that line the bladder, ureters and kidneys.
GuestApril 23, 2008 at 3:25 ambeen looking around for articles on this very thing…and i know i’m just a layman but it seems to me that the Urethra is something that is taken into consideration at the time of surgery………http://jjco.oxfordjournals.org/cgi/content/full/27/6/406
And yes Gracie….write down exactly what the surgeon is going to remove…thats a variable from institution to institution i have found.
PatI absolutely still have my urethra, although I was warned that if it looked like it might be cancerous that it would be removed. It was never suggested anytime that it might be removed at a later date.
I sure hate to second-guess a surgeon who has a far greater grasp of the entire situation than we ever could, but I also hate to see an additional surgery performed on an older man.
Tough choices and no good answers.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John SteinDebbie, I am so sorry that your father has to have another operation so soon after the r/c.
My father was told on the morning of his r/c that they would also take the urethra as the last time they were in there, there were abnormal cells or something, they said that It would add about another hour on to the r/c, I am not sure whether they will need to open your father up again, I know in dads case they did say they would cut around the end of the penis, but iam not sure whether they take the water tube (as dads surgern put it) from there or from in the belly.
For them to take your fathers kidney, I am guessing that the cancer had crept up the urita, this was also the case with my father, although they were able to get a clear magin & not take his kidney.Prehaps they felt that keeping your father under for the additional hour or so would have been dangerous & that it would be benifical for him to come back to have the urethra removed, I realise that this is a set back but once it is removed it is one less area for the cancer to come back, try & keep your chin up & I will be thinking of you guys & also harleygirl & her family.
Regards,
CathyHarleygirl, thank you so much for sharing your Dad’s experience. It has helped me to better understand the surgeon’s rationale. I believe that the surgeon said that he would like to perform the surgery at the 3 month mark from the date of his last surgery which would be next month.
My Dad was so distraught when we spoke, that I didn’t want to ask what a second surgery would involve. I only know that the surgeon told him it would be a two day hospital stay. Do you know if the urethra can be removed through a cystoscope or would another incision have to be made? Recovery time?
I am so sorry that your Dad is facing the same thing.
My father is 81 and is in a similar situation to your Dad’s. The surgeon did not remove my Dad’s urethra during his bladder/prostate removal last year either saying that the margins were clear and that Dad had been on the table so long (8 hours due to adhesions) that he did not want to keep him under any longer.
Now a year has passed and Dad has had problems with bleeding from the urethra since last July. His original uro kept telling him the bleeding would eventually stop. He finally sought a second opinion and had a polyp removed from his urethra last week, hopefully to stop the bleeding problem he has been having. The new urologist said there were abnormal cells in a saline wash he did of Dad’s urethra but we don’t have the pathology of the polyp back yet. The second urologist said it is likely that Dad will have to have the urethra removed and if it turns out this is the case, he will schedule Dad for the surgery quickly.
Dad’s first uro wanted to take the urethra last month without performing any tests to justify this surgery. Dad didn’t go for this and thus sought the second opinion. The second uro (who does over 80 cystectomies a year and also is a professor at a leading university hospital here in Texas) said that he usually does NOT take the urethra either UNLESS there is definite presence of cancer there when the bladder/prostate are removed. However, there is always the chance that there are micro-mets that won’t show up until the disease has progressed. With bladder cancer, it is not out of the question that the cancer could spread through the prostate into the urethra.
Yes, I wish Dad’s original surgeon had removed the urethra during his initial surgery. We weren’t told then that he might have to have it removed later either. He had no positive nodes and did not have chemo either before or after surgery. Now he has an enlarged pelvic node and the second urologist wants to know how many nodes were removed during the bladder/prostate removal.
I don’t want my Dad to have to endure more surgery either, especially at his age. He had to be under general anesthesia last week to get the polyp removed and didn’t start feeling like himself for about four days. However, for my Dad, if the urethra needs to come out because of cancer or the chance of cancer, it must come out. With that said, I wish we had been told that he needed it removed earlier on in this process so he could have had it removed and not had to endure the bleeding problems he has had, not to mention all the scans and MRIs and x-rays, etc. We could have had all this behind us instead of facing more surgery now, a year later.
You can wait for symptoms to appear and then have the urethra removed, or listen to your surgeon and get it out now to prevent potential problems from developing down the line. Would there be time for your Dad to get stronger before the doctor wants to operate? I hope it all works out for both of our Dads.
Debbie – I would be quite upset also. I can’t imagine the explanation for not removing it the first time around. It seems like an oversight.
And if there aren’t any signs of cancer – why not keep a close eye on it?
I can see why you would feel badly but do not blame yourself for things you had no control of. You have done your best in researching the best doc for the surgery in your area.
I am looking at RC in a few weeks. Makes me want to do a laundry list of everything they are taking out and what they are leaving in. We all ‘assume’ everyone is on the same page.
I hope that a solution is found that causes the least amount of stress and trauma for your dad. Please keep us posted.
Best,
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