The current urologist IS our second opinion. He did the second TURBT procedure and came back with the INCONCLUSIVE pathology report as to whether the cancer is in the bladder wall or not.
I told my Dad I had contacted MD Anderson to see what had happened to his referral and this is his email reply to me: "I think it's too late to do anything else now. I have waited so long for this that I think I should go ahead with it. I think everything will work out--What
ever will be---will be."
I dont' want to frighten him or make him lose whatever faith he has in this urologist who is about to cut him open. But I have MAJOR doubts, especially when the urologist office tells him to show up for this major procedure two hours before the operation!! This doctor has done a radical cystectomy on a man my brother knows with supposedly good results, which is the reason we went to him in the first place. So, that's ONE we know about. But, what we've received in the way of care and followup since this process started is less than acceptable, as far as I'm concerned.
Believe me, my concern is NOT with whether or not the urologist's feelings will be hurt. I couldn't care less about his feelings, especially after he spoke to me (and my father) so rudely on the phone after I paged him to get the pathology results he had promised to call with. During that late Friday night conversation, my father expressed a concern that the urologist didn't seem to want to do the surgery and asked him if it was because he didn't think he would survive the surgery or heal from the surgery, to which the urologist replied "Both of the above." Nice. And this is the same urologist who made a second late Friday evening call the next week to ask my Dad why he had decided to go to MD Anderson and tell him that he would do the surgery, after all. Was he afraid he was about to lose a sizeable amount of revenue? Why that call? My concerns are about my Dad getting the absolute best care, and also with how much time we really have left to get the best outcome. If you ever saw the movie "John Q", that's how I'm beginning to feel.
I dont' know how to ask my Dad to start over. If we were able to get in some place new, how long would it take to get the operation done? Would we be waiting another 3 months? This is my fear. I truly don't think we have that kind of time. I'm so discouraged by my experience with the medical system up to this point. No doctors seem to care or have any compassion or concern about what someone like my Dad might be going through with this terrible diagnosis. Sure, they see it all the time, but that doesn't give them the right to be rude and almost cruel. And, if we do go someplace else to see a different doctor that we still don't know, how do we know we will be treated any differently or better? I'm beginning to think all doctors are like our urologist and don't return calls and have rude office staff. Don't get me wrong. I will put up with anything if the doctor has the absolute best skills for the job. But how do you determine what kind of skills a doctor actually has? Our current urologist is not listed on any of the doctor search sites.
I don't think you need a physicians referral is you are on medicare. There is a lot of preparation before the surgery, meeting the stoma nurse, meeting the anesthetist, blood work, EKG, bowel prep the day before.
I had my TURB in July and did not have my surgery until Oct. 19 so your Dad is still o.k. from what I read and if it were me I would remember what Pat said and RUN to another doctor. If your Dad has all his test results and takes them to the new urologist it will speed up the process. The surgeon I went to got the slides from the lab where they were done, read them and made his decision which turned out to be the same as my local urologist. Difference is, the surgeon who did my operation teaches that very procedure at our state college. Also, my local uro was not upset at all that I picked a different surgeon than the one he recommended.
The very least that needs to be done in way of prep for surgery, would be a bowel prep, pre-op blood tests , electrocardiogram and a chest x-ray. It is inconceivable that a man of your father's age would be told just to "show up".
If it were my loved one, I would get him a referral for consultation at MD Anderson, pronto!
At this point, if you really think that taking this further step to sustain your father will hurt the Urologist feelings, then you have the wrong doctor. Mu Urologist always told me that asking for a second opinion would never hurt his feelings, not one bit.
In my own humble opinion, a second opinion should be a standard procedure in Bladder Cancer pathology, and more especially when facing RC.
Warmest and best wishes,
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Harley....must you have a physicians referral? Does he have a GP...Internist...anyone....that can do that for him. It doesn't have to be the urologist. Is that how Medicare operates or is it how the Texas bunch operate? I was able to get into 3 major cancer centers without a physicians referral....I just called...expressed the urgency...and got immediate attention. I don't understand? Rosie...can you pull some strings for her?
Yes there is lots of prep to do beforehand. I would not go with this doctor.
Where on earth did you read the more TURBs you have the riskier it is?...There's a lot of stuff out there on the internet you're better off not reading as it really doesn't relate to your case.......there are so many variables to take into consideration. Its not the TURB's ..its the chance of recurrence and of a more aggressive cancer appearing. Forget that stuff....Get another doctor..........Pat
Thanks, everyone, for all the suggestions. So far, I have not been able to get anyone at UT Southwestern to respond to my queries or offer any encouragement at all re: getting an appointment there. I called MD Anderson this morning and was told that the referring urologist had requested that the referral be cancelled since my Dad had decided to have the surgery done locally (by the urologist we can't ever seem to get in touch with!)
After much prodding, my Dad called the urologist's office today and found out that he had been scheduled for surgery on April 11! Wonder if they were ever going to inform HIM about that?? And, supposedly, someone at the doctor's office told him to just show up at the hospital the morning of surgery about 2 hours before operation time, and, oh yeah, be sure not to drink anything after midnight the night before!! From what I've read in different places here, there are a lot of things to be done in the way of preparation before even thinking about the surgery. Like bowel preps, stoma consultations, IV fluids, not to mention a meeting with the doctor long BEFORE you see him in the operating room to talk about what the procedure entails and what he should expect when he wakes up and what recovery will be like, etc. Am I wrong here?!
All this only ads to my trepidation about this urologist and his performing this surgery. The initial diagnosis was made January 18 and they are not getting around to doing the surgery until April 11?! What's wrong with this picture?! As you can tell, I am more than a little frustrated. I don't think we have time to start all over again from square one with yet another TURBT. I also read online today that the more TURBTs you have before cystectomy, the worse your prognosis for survival will be.
I know my Dad is just ready to get this whole thing behind him. I just wanted for him to be in the best possible facility with the best possible doctors to take care of him. I could be wrong, but I don't think that is what we are going to get the way things stand now.
Rosie is right. Call the hospital and request all his tests...they're his and they will provide them for you ASAP...he may have to do the calling with all this privacy stuff these days.......the other team should be able to get you in very quickly and other than a look-see if the CT scans are definitive and the path data definitive they should move very quickly.
Good luck...80yr olds usually don't want to listen to their kids. I was unable to talk my father out of bypass surgery at 82 when his cardiologist said he could control him with meds....and they gave me back a vegetable......sugery a success...patient in nursing home!........pat