Hello all! I hope everyone is doing well or at least getting there.
I need some advice, suggestions, anything really.
So here's my story:
My father has been experiencing blood in his urine for a month. He finally told my mother and then had my mother ask me about it. (I'm in the health care field. My father is 63, I'm 23. He's awkward about certain topics like this). My father is known to randomly pick up TV's and feel the need to remodel our house and things like that. Four years ago, he had a hernia repaired, so I figured he probably pulled something and that's what he was experiencing. When I saw the blood, I got very scared. This was no "red tinge", there was fresh, bright, blood and a decent amount of it. I asked him if it burned or hurt at all, nope. About 3 weeks before he told my mother and i this, I started to realize he was getting up in the middle of the night to urinate, almost 2-3 times a night. That was very out of the ordinary (I feel so guilty about not realizing this sooner and asking him what the deal was with this sooner.) Anyway, the next day, i called a urologist that was referred to us by his general physician. He ordered a urinalysis and it came back with a few WBC. He ordered cytology and blood work and a CT scan. On the 17th he had a cystoscopy done, and they did a biopsy. After the cystoscopy, the urologist told my parents that it's cancer, schedule a TURBT with him in a nearby clinic and pretty much sent them on their way.
What bothers me the most is that you don't just tell someone they have cancer and good day! SEE YA LATER! My parents would pretty much have no clue what bladder cancer even is if it weren't for me researching day and night about it. That same day, I went back to urologist's office to request some files, particularly the CT scan. My father had ultrasounds and x-rays and CT's because of his hernia four years ago. There are renal cysts (I know they're common) and a 4cm bilobed cystic structure in his inguinal scrotal region, that were not there according to his scans and what not 4 years ago. None of this was even brought up to my parents. Since i was already unhappy with this urologist, I started looking for second opinions. On Thursday the pathology report came back.
This is what the report says:
papillary transitional cell carcinoma, moderately to poorly differentiated (high grade), necrosis
All the urologist told us was that it's high grade. Staging isn't able to be done because no subcutaneous or muscle wall tissue was biopsied. Understandable. Well I have second opinions scheduled (3 of them). Now I'm preparing a list of questions. Because I know that we don't have the staging, we are limited with information. However, we want to continue with treatment (if necessary) with the doctor that preforms the TURBT.
I really need advice on what questions I should focus on asking and what we should think about while making our decision when it comes to choosing a doctor.
Thank you for all of your help and time. There's just so much information to read and sort through, so i have so many questions about so many things. I know that our time is limited with initial consultations, but somehow i'm supposed to gather enough information of who I'm going to entrust with my father's life. Someone said to rate them from most important to least important. ALL of it is very important to me. I just need a few suggestions of what to ask to just get us started and how to "grade" each doctor I suppose.
First, he's already been diagnosed with high grade bladder cancer. You do not want to try to randomly figuring out if a urologist is the right one or not.
He needs to get to a top bladdder cancer doctor at a major bladder cancer center. He needs a TURBT with full margins and the pathology report to be read at a top bladder cancer hospital. Yes, even the pathology doctors are better at the top hospital.
Other than making sure they are not bladder cancer, I wouldn't worry so much about the other things found. Cancer wins when it comes to prioritization.
A TURBT is the next step that he needs to get staging. There is typically another one done within six weeks of the first. You mentioned that you were in the medical field. That's good because you will already understand the difference in levels of specialty.
As you know, a urologist covers all urological diseases and conditions, the same way a general physician covers the whole body. Once you know you have bladder cancer, you get a referral to a top urological bladder cancer specialist. They are better at doing TURBTs and tend to get good margins the first time.
They also are better at determining the treatment option with the best outcomes.
Let us know where your father lives so we can recommend a top doctor/hospital in his area.
I am not a doctor but I am a patient with a good bit of experience who has done a lot of research. In the meantime, I suggest reading this post I wrote previously:
Major Bladder Cancer Hospital
Within that post is a link to a guide I put together to help bladder cancer patients understand the path(s) through this. Here is that link:
Patient Guide to Bladder Cancer Treatment
Also, you want a doctor that specializes in bladder cancer, not prostate cancer or some other bladder abnormalities. If you are doing your own checking, check their bios and be sure that they have the correct specialty. Doesn't matter if cousin Mary or Doctor Bob heard that this guy or that guy is a really good urologist.
Thank you for your response, I really appreciate it.
We live in Chicago. On Tuesday, we're meeting with Dr. Steinberg at UIC.
On Thursday, we are meeting with Dr. Kozlowski at Northwestern.
I'm waiting for Loyola to call back with what openings they may have.
I found these doctors on my own, my father's urologist didn't recommend anyone to us. He told us he had extensive knowledge in this field. When I researched him, he is part of a uro firm and there is only one doctor there that specializes in only radiation treatments for urinary cancers. He wanted to do the TURBT in his clinic down the street. I said absolutely not, this is CANCER and we are going to an oncologist and are going to have this done in a hospital.
The biggest problem I'm having is deciding what to ask. With all of the different treatment options, and staging, and chance of reccurence, etc. it's so much information that I don't know what to ask first. I don't want our consultations with these doctors to be a "waste" I guess. I want to have the most information I can in order to help my father make a good decision on who to choose. I'm already leaning more towards Dr. Steinberg.
Steinberg is probably the way to go. He specializes more in bladder cancer. Kozlowski is more prostate and metastatic disease. I read this information in previous post from Pat to someone else in the Chicago area.
Steinberg does lots of TURBTS and he does lots of radical cystectomies and diversions. But, you don't need to be asking cystectomy questions at this point.
What to ask?
-Since I've already been diagnosed with high grade bladder cancer, how soon can you do a TURBT? Does this afternoon work for you???
-Based on the reports, do you think I will be in the hospital overnight or be out a few hours afterward?
-Do you expect I will need to go home with a catheter in based on the size of the tumor?
-Will you be giving me something like pyridium for bladder pain after the procedure?
-What other tests do you think I need now or should we just discuss that after the TURBT?
-What should I know now that I haven't asked you?
He can't tell you much of anything until he knows what he is dealing with. Bring the reports and any xrays and scans on CD. Get the slides from the biopsy also and bring them with you.
Once he has a look, schedules a TURBT, and gets the pathology, he can discuss treatment options. That guide I posted will give you a pretty good indication of the standards of treatment depending stage and grade.
Your father is so lucky to have you on his side. One of the most difficult things we seem to have on this Forum, when people arrive "newly diagnosed", is getting them to understand the importance of getting to urologist who specializes in bladder cancer. You are way ahead on the learning curve here!! And especially since it appears to be high grade.
I won't give you any more advice...Mike has given you plenty and you seem to be doing fine. I will add my best wishes to you and your father.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society