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Mom died from BC & now I\'m afraid I have it

6 years 1 month ago #43419 by sara.anne
What kind of doctor for bladder cancer? Unlike many other cancers, bladder cancer usually is treated by a urologist. If found early enough it is usually confined to the bladder and hasn't spread outside of this organ.
IF it spreads into the lymph system, then usually an oncologist is called in.

However, not all urologists are equal when it comes to treating this disease. Most urologists make a living from treating prostate issues!! You need to find someone who has an interest in bladder cancer and who treats MANY cases a year. It might be a good idea to have a long talk with your urologist when the results come back from your TURB (biopsy). If you decide that you would feel more comfortable with a second opinion a good option close to you is the University of Chicago:

http://www.ucurology.org/areas-of-specialization/bladder-cancer

Our president, Cynthia, was treated there for a very complicated case.

The best outcome of a second opinion is that the specialists concur with the recommendations of your current urologist. You will then feel very comfortable continuing there. If, however, there is a difference of opinion, or you feel that your current doctor isn't offering you the best treatment, you do have options.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 1 month ago #43418 by mmc
Somebody here will likely point you in a direction on the doc. If you were in New York, Texas or Colorado I could point you.

Also look on the home page at NCI hospitals. Then look up the urology department at those NCI hospitals and look for "bladder cancer" instead of "prostate cancer" as the specialty.

You want a team but the lead is usually a urologist. Urologic oncology.

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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6 years 1 month ago #43417 by bostonterrierlover
Thanks for the responses. I should give a little more information about myself. I am 59 and I live in central Illinois. I have never smoked (although both my parents did) and never been around any chemicals.

How does a person find a doctor that is experienced in bladder cancer? Are you referring to an Oncologist?

JoAnn

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6 years 1 month ago #43412 by mmc
Hope it isn't bladder cancer but even if it is, it does not necessarily mean you will have the same outcome as your mom.

Bladder cancer is very treatable depending mostly on the stage and grade. One step at a time. My first time with high grade bladder cancer was over 6 years ago. My recurrence (muscle invasive) was over four years ago. Had my bladder removed and I've been cancer free ever since.

Let us know as soon as you know more. Many of us have been in the spot you are in now and we are happy to help you. Get to a bladder cancer specialist as soon as the diagnosis is confirmed.

They say bladder cancer is not hereditary but I am not convinced. I think there may be some genetic component as well as a likelihood of higher risk behavior (smoking, the well water with arsenic, diets, etc.).

Better outcomes come from doctors with more experience treating bladder cancer specifically. You don't want a "general" urologist if you have bladder cancer.

Good luck and keep us in the loop!

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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6 years 1 month ago #43411 by Joey
Before my biopsy we knew it was cancer based on my cystocopy exam. I had a rather large tumor almost 4 cm removed and because of the size and location I had a stent placed in my ureter and also spent the night in the hospital after the removal.

About 6 weeks later I had another biopsy and was also put under

I did get a second opinion to review the slides and cat scan and met with the doctor on recommended treatments after both procedures

That was almost 5 years ago and still doing very well.

I am being treated at Hopkins

Joey

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6 years 1 month ago #43404 by sara.anne
Nancy answered many of your questions. And yes, as she said, most people go home the same day as the biopsy (A TURB). Since you will have had general anesthetic, you won't be able to drive home, so be sure to take a "designated driver" with you!

After you receive your diagnosis from the urologist (and he may wish to do a second TURB to be sure of the diagnosis and extent, IF it is bladder cancer, this would be the time to consider a second opinion.

If you go to our home page, at the top is a "button" labelled "HELP." Click on that, and under that there is another "button" labelled "Doctor and Center Locator" where we have tried to list as many reputable places that specialize in the treatment of bladder cancer. Also, if you tell us where you are located geographically, and where you are currently being treated, I am sure that others on this Forum will chime in with suggestions.

As Nancy also pointed out, many of us here have been diagnosed with bladder cancer and are doing great!

Good luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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