Newly Diagnosed

12 years 5 months ago #39794 by sara.anne
Replied by sara.anne on topic Newly Diagnosed
You have several choices in North Carolina...here is a list from the Resources on our home page:

UNC-Chapel Hill Lineberger Comprehensive Cancer Center Chapel Hill NC Urology Bladder Cancer Physicians
Duke University Health System Durham, NC Urology Bladder Cancer Physicians
Wake Forest University Baptist Medical Center Winston-Salem, NC Urology Bladder Cancer Physician

Even if you need to travel a bit, it is well-worth it to get an opinion from an expert!! Maybe some others on this Forum will have some more specific recommendations.

Sara Anne

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

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12 years 5 months ago #39793 by clanali
Replied by clanali on topic Newly Diagnosed
I am located in charlotte north carolina and currently seeing dr schaffer

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12 years 5 months ago #39792 by Cynthia
Replied by Cynthia on topic Newly Diagnosed
First off if it is confirmed by your pathology report that you have bladder cancer that can mean many things. The vast majority of bladder cancers are found to be non invasive and depending on the grade or the cancer some can be treated by removal alone. Even if invasive many many of us including myself live full lives following surgery and treatment. Until you know what you are dealing with as Sara Anne says just take a big breath.

Transurethral resection of a bladder tumor refereed to as TURB Or a TUR where they just do random biopsies is the scrapping you you talked about. Means they will put you out and using a procedure much like stereoscopy to take samples of the lining of the bladder and remove any tumors they find.

A second opinion in any cancer diagnosis should always be done. As Sara Anne told you not all Urologists are specialists in bladder cancer so it is important to make sure you find someone who is. So again let us know what state you live in and we should be able to help give you direction.

Remember we are here if you need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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12 years 5 months ago #39790 by sara.anne
Replied by sara.anne on topic Newly Diagnosed
First, take a deep breath!!! Oh how I hate to see someone else starting this journey :angry:

However, first things first. IF your diagnosis, so far, as been only by cystoscopy, there is even a chance that it might not be cancer! The definitive diagnosis will be made after the TURB
(transurethral resection of the bladder), or, as you referred to it, "scraping." Rather than scraping, the uro will take biopsy samples from various suspicious areas and send them to a pathologist for diagnostic analysis. Also, he may then remove any lesions that he thinks might be cancerous, and that he is able to.

Several days after that he will be better equipped with specific information to discuss with you.

Very often, the first TURB is not enough. A good uro will repeat this procedure in several weeks to be sure that he/she was able to sample all suspicious areas, and to double check others. Even at excellent urological centers, the second TURB finds things that were missed the first time.

Where are you located, geographically? Where are you being seen?
Unfortunately, many urologists are not experts in bladder cancer treatment. This is as very treatable disease in most cases, IF the correct treatment is started early. However, many, many urologists spend their time with prostates and are not really proficient in the nuances of bladder cancer. One of the major TV networks had a report just a few months ago on the HUGE percentage of bladder cancer patients who do not receive optimal treatment.

Therefore, if at all possible, we ALWAYS recommend a second opinion at a center that has specialists in this area. After you receive you pathology results, this would be a good time to seek one. You will either find that your current uro is "right on" and doing/recommending all the right things, (best case) or you will find that there are other, better approaches. If you let us know where you are located, geographically, we can perhaps make some recommendations.

Best of luck to you. Feel free to ask any questions here...we have BEEN THERE, DONE THAT!!

Sara Anne

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

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12 years 5 months ago #39787 by clanali
Newly Diagnosed was created by clanali
I was just diagnosed yesterday with bladder cancer from a cystoscopy. I guess my next step is the scraping of the bladder( i dont remember the official name). I guess my question is when do I get a 2nd opinion? After the scraping when they tell me what stage? Any info is appreciated

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