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Having bladder tumor removed next week :( ??

8 years 9 months ago #33535 by Tom1949
If I do have a malignant tumor in my bladder....I am in Iowa. I am a hour from Omaha,NE 2 hours from Des Moines, Iowa. If I do want a specialist who on here knows who the best are? Or can point me to a link that has a list? Thanks again everyone/

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8 years 9 months ago - 8 years 9 months ago #33531 by mmc
It doesn't hurt to ask. I didn't though and nothing went wrong on my initial TURBTs. There are stories of people having problems and getting their bladder punctured and stuff like that so experience is clearly important.

If your ulogist does a lot of TURBTs then you're probably fine but the best specialist you can find is better. I know that's kind of non-committal on my part but I can't make the decision for you.

If it was a situation where you were already diagnosed with muscle invasive, then I would say this: Not an option <--(click link) but you're not.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 9 months ago #33530 by Tom1949
Do I need to be asking my regular urology doctor how many he does a year etc or for this first step is it okay.

He is a Fellow of the American College of Surgeons and Board Certified - American Board of Urology, 1997

Thanks

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8 years 9 months ago #33529 by mmc
Tom,

Yes, that is a TURB (also called TURBT). TransUrethral Resection of Bladder Tumor. They will take it out and biopsy it.

You will be under for the surgery and depending on how much they have to do, you may have to have a catheter for a day or more. Often times not, but don't be surprised if you do.
If you do, ask them for some of those little packets of surgical gel to put on the tip of the catheter so it doesn't get hung up on you. That can be uncomfortable.

Usually you get to go home the same day but they like to be sure you can urinate ok before you go home.

There is a lot of information on this site. On the home page you can find a glossary of terms and all sorts of good information. Understanding is good but don't jump too far into all of this until you know exactly what you have.

While we are happy to have new members to share war stories with, we are just as happy when someone comes back and says "Yay, it was benign!" and then we never hear from them again.

Where do you live? Pat (one of our members here) does tons of research into doctors and can probably give you some pointers on the best in your area. Most urologists are either generalists or specialize in prostate cancer since that is more prevalent than bladder cancer. BUT, you can't just drop everything with your prostate either. You need to follow up with that as well. It's ok to have a specialist that deals with each (and preferred).

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 9 months ago #33526 by Tom1949
Thanks for your assistance I've been numb for 24 hours. My understanding is the tumor will be removed and biopsied that isn't a TURB is it?

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8 years 9 months ago #33525 by mmc
Tom,

Sorry to hear about the situation but glad you found us here. So, yes, you are getting a little ahead of yourself but the 'plan for the worst, hope for the best, and be grateful you wind up in the middle' is a good plan.

You don't really know until the tumor is out and the pathology report comes in. If it is only on the inner lining (majority of the time this is the case) then treatment will depend on the grade. Yes, it can be a big tumor but still just be on the surface.

It sounds like you might want to ask about prostate biopsy as well since the PSA doesn't really have much to do with bladder cancer and it was just coincidence that they found this.

This is something I put together some time back. It shows at a high level how the treatment options usually flow. Some folks have found it helpful and printed it out to use as a discussion tool with their doctor. Map of the journey

If bladder cancer is indeed the diagnosis, your very next step should be to get to the best bladder cancer hospital with the best doctors for what many call a 2nd opinion (but I call it getting to the right specialist).

Actually, if your urologist doesn't do a whole lot of TURBs, you may want to consider getting the TURB done by a top bladder cancer doc. The more experienced and more focused on bladder cancer, the better it is for you. The top hospitals for bladder cancer also have better pathology labs/doctors.

I do want to stress that you are not alone in this. It's new to you right now and it's pretty dang shocking but there are many of us here who have been there, done that.
Bladder cancer is one of the most treatable cancers if caught early and treated aggressively.

My fingers are crossed that you wind up telling us you have a benign tumor or at the most, low grade superficial.

Only unasked questions are the dumb ones so ask anything and everything you can think of.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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