9 years 10 months ago - 9 years 10 months ago#32084by Patricia
Ok i realize its 304 miles.....if you can go out of state Baltimore, Maryland is about 240 miles and there you have another top Urological center(#1) in Johns Hopkins. Or its 150 miles to the #2 Urological center at The Cleveland Clinic in Ohio. Either one depending on your insurance.
Dr. Schoenberg at Johns Hopkins
Dr. Campbell at The Cleveland Clinic
Last edit: 9 years 10 months ago by Patricia.
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9 years 10 months ago - 9 years 10 months ago#32082by Patricia
OK..i'm going to get right to the point here...get your pathology report, a disc of your CT scan and any other records and head to another uro/surgeon who is a specialist in bladder cancer at the U. of Penn Medical Center for a second opinion and a better one at that immediately.
Dr. John Malkowicz
Yes it is possible for a cytology to come up a false negative..and if you're having burning and flank pain trust me you have an infection.
Size of the tumor makes no difference in its stage or grade..believe me...mine was a tiny 1ittle papillary tumor that my local yokel thought was nothing ..oops..guess what it was invasive.......so in this case..size doesn't matter.
But the urologist does and you don't want to mess with this.
I don't care who recommended him...he probably see's mostly men with prostate problems. You need someone who deals with lots and lots of bladder tumors and your going to find that at a major cancer, urological or university setting.
Malkowicz is listed in Castle Connelly's Best Docs in the US...he's no slacker.
Do not go into any BCG treatment until you get this second opinion. If you think you're burning now you're going to be in Hell after Friday.
dpoe, I'm no expert on this, but i have been going through this
cancer thing for twenty yrs. From reading your posts, the first
thing i can tell you is " TO TAKE CHARGE " . You or someone
very close to you needs to start driving the boat. DO NOT let
the doctors intimidate you. If you have question, ask them. If
you need to call them then call. This is probably going to be a
long process. Taking charge should be the first thing you learn!
I didn't think i would have the "what if" after my most resent
cancer, but i was wrong. I guess we all worry about our cancer
returning. Just do not let it consume you. I have learned to
busy my mind with other thoughts. It works most of the time.
The burning, back hurting, etc. sure sounds like a infection to me. Call your doctor.
Wishing you the best.
I know it doesn't seem like it right now but you will feel normal again.
I have no idea if he was kidding, but this is not something to kid about so I hope he wasn't kidding. If that's his kind of joke, then maybe next time you are at his office just say something like, "Oh my God, your wife was just shot to death in the parking lot! Oh, just kidding! Ha ha!". That's about as funny as a joke about the size of the tumor.
Here is something you should read. I posted it before but it applies to all newly diagnosed folks.
When reading that page, you will find a link labelled "Bladder Cancer Treatment Guide for Patients". Follow that link and look at the flow chart.
Once you learn more, you will feel like you have some control. I know it's hard, but you can do it!!!
If your doctor pays you to visit him, then he is in charge. If you are paying him, then you are in charge. You are entitled to honest answers and full disclosure and every record he has in your file. You paid for them all and should get them.
You go to him for his expertise. I really suggest you not wait until next Friday. Have him call you to tell you the stage and grade and if the pathology report indicates that there were good margins.
You will also need a follow up TURBT. This is usually done about six weeks or so after the first and is to be sure that they got it all. Bladder cancer is very often understaged from the first TURBT. The second TURBT should be done at a major bladder cancer hospital though. (ARE YOU STARTING TO NOTICE A THEME HERE?)
Trust me, if this advice was not very, very important, I wouldn't keep harping on it! Read the threads that I pointed you to in this message.
Move fast, get to the right place, and take charge of your case. First, you have to know exactly what you have.
It sure sounds like bladder cancer and I'm sure the doctor would have called you to say it wasn't by now because I'm sure he got the pathology report back weeks ago.
You still need to know stage and grade though because that is what determines the proper treatment path.
9 years 10 months ago - 9 years 9 months ago#32078by mmc
Your doctor's comment about "All tumors are cancer" is just wrong. Hopefully, you just heard him wrong.
Basic facts about bladder tumors
A bladder tumor is an excessive reproduction of cells that line the bladder. Most tumors are noncancerous called papillomas, a wart like growth. Cancerous bladder tumors can spread through the bladder wall and into other organs via the blood stream.
Do a Google search on "benign bladder tumor" and you will find about 578,000 results.
Hopefully, this is giving you a clue about why we suggest that ANYONE diagnosed with bladder cancer get themselves to a major bladder cancer center with the top doctors who deal in bladder cancer every single day. A local urologist specializes in a broad spectrum of urological issues. A bladder cancer specialist deals in bladder cancer. The same way that your general physician refers you to a specialist (such as a urologist), your urologist should refer you to a specialist in bladder cancer. If not, find one yourself and get to them.