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Newly Diagnosed
Posted by clanali on October 28, 2011 at 10:35 amI 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
rbmc replied 13 years, 2 months ago 6 Members · 10 Replies -
10 Replies
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Hi Alan…….
Hope your journey has had some ‘positive’ results. I’m still a newbie at this. After 2 surgeries with a doctor, and hospital, I didn’t like, it was time for that 2nd opinion. Now I feel more confident that things are being done to go after the cancer. I recently graduated from the 6 week BCG treatment, and have high hopes for a good cysto look again in January. -
Allan
This is the reason we are here. Some of us are Good Pre-Procedure Questioners and some are not. I never knew that the Radical Cystectomy involved removing the prostate…. I only found this out when I looked it up on line. I asked the Dr. about it and he said “Oh yes that is part of the procedure.”
He was not at all miffed that I questioned him. As a matter of fact, this changed everything about our conversation from that point on. He now gives me the Whole story at every visit.Good luck with the TURB, and let’s hope you get “Clear Margins” the next TURB. (You will have 2 TURB’s. One to get a sample and the next to check for margins. Clear margins mean you can start BCG treatments and “hopefully” no furthur surgery.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]Allan, there is still (and probably always will be) a bit of “the God Complex” in medicine. Many patients think that the doctor knows everything and is the only one competent to make decisions. They just want to lie back and let the doctor “cure” them. Then there are others of us who want to know EVERYTHING that is going on or could go on. Back in the “good old days” doctors were trained in the “God Complex” way of thinking.
It is a very personal decision…I have known MD’s who bought this “Complex” deal themselves…AS PATIENTS! Knew one doctor who, when ill, didn’t want to know ANYTHING about it…just let his doc make all the decisions.
Many patients feel insecure, and do not want to question their doctor because he/she might get mad at them…This threatens their sense of security.
That is why we work so hard to inform patients of their rights to second opinions.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorWishing you well tomorrow. I didn’t see a doctor the day of my preop, just the lab techs so I didn’t get a chance to ask many questions. After your procedure, we can help with understanding the path report when you get it. Hoping for the best outcome after all the facts are in.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNThank you for all the good info. I am having my pre-op for the TURB tomorrow morning. What are some good questions to ask the doctor? Any info is appreciated
Hello… welcome to this site. It’s a lot to take in when you first hear that you may have bladder cancer. After the numbness wears off, your head fills with questions and fear of the unknown. We are here to help with both those things as best we can for you.
A good place to consider for a second opinion is of course Duke. Your uro may have suggestions as well (mine sent me to Vanderbilt) but ultimately you are the decision maker about who you see.
You can read about Duke’s Urology department here if you haven’t already:
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNYou 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 PhysicianEven 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 ModeratorI am located in charlotte north carolina and currently seeing dr schaffer
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 SocietyFirst, 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
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