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Necessary scope?

3 years 2 weeks ago #49993 by LauraJose
Jopo,

I am wishing you all good news with your tests.

I am also a newbie to this forum, with some undiagnosed symptoms that may or may not be bladder cancer. I am experiencing intermittent blood in my urine. Some days, I will have clear pale yellow urine that we all love to see. Other days, I will have one episode of very dark reddish brown urine, not cloudy, but very clearly containing a lot of blood. Then the next time I void, no blood at all, nice clear urine. I may have one or two episodes of blood in my urine on one day, then 2 or 3 days with no blood, then 3 days in a row with one or two episodes each day.

If you don't mind sharing extremely personal information, could you tell me when you observed blood in your urine, did you always have blood in your urine, or did you have some days with clear urine?


Also, does anyone know if the Mayo Clinic in Jacksonville Florida is a good facility for bladder cancer treatment?

Thanks for any information.

Laura

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3 years 1 month ago #49939 by Wichobel
You don't have choice you must go to an urologist. Your case looks like mines. I had cat scan ultrasonography, etc the second cat scan showed the tumor, so I had a cithoscopy and there were found thre tumors. I had won weight . It is probably a bladder cancer but the unique way to know is with a cithoscopy . The good new is that 75 percent of bc are superficial with excellents treatments . Good luck this forum is awesome !

Diagnosed 01/13/2015. T1G3
1rst turb
2nd turb 02 /2015
6 BCG
Now 15 BCG. NED. Waiting

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3 years 1 month ago #49938 by Jopo
so, my life went on. And was thinking maybe, just maybe ... the urinating of blood was one of those flukes, to never happen again !?! And then ... about an hour ago, I started urinating blood again. I guess I need to find a Urologist. I live in Central California, near Modesto. I have Aetna insurance. If anyone happens to know of a good specialist in my area, I would really appreciate knowing. Thank you.

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3 years 1 month ago #49936 by rbmc
Yes, find a way to have the scope, with a qualified bladder cancer doctor. In my opinion, the "cysto" (scope) is the best way, and quite simple method, to get directly up there for a look around. You've had a noticeable symptom, not one that will recur on a daily basis. A urine test may reveal microscopic blood still present. Part of BC is awareness, and taking action to evaluate the situation. Various treatment can be successful, and keep you as a survivor. Good luck, and keep us posted.
The following user(s) said Thank You: Jopo

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3 years 1 month ago #49858 by sara.anne
It all depends on your insurance. If you have a list of preferred providers, then you most likely need to choose one of them.

How to choose? As they say "it's complicated." First, if they are at a place such as MD Anderson or Sloan Kettering you are probably fine. Second, are they at a local medical school practice? Third, google them...BUT you are not reviewing a doctor like you would a restaurant! Mostly, I would ignore patient recommendations (unless they are absolutely terrible) since what you are looking for is experience in bladder cancer and competence. You can usually find the doctor's qualifications and experience listed under his practice.

1. Is he BOARD CERTIFIED in urology?
2. Where did he receive his urological training (residency). ( I always joke that I wouldn't go to a doc who graduated from the Autonomous University of Guadalajara. Would you believe that someone actually recommended just such a one when I was looking for a new internist?) You are looking for someone who trained at a MAJOR university.
3. They usually list their clinical specialties. Bladder cancer should be listed. Many urologists see mostly prostate problems.
4. After you have narrowed down the choices, call and ask a. if he has a special interest in treating bladder cancer patients and b. how many bladder cancer patients he sees a year. THE MORE THE BETTER.

Do not necessarily ignore one with "bad" reviews. What do these reviews tell you? If they all say that he is horrible with patients and staff, OK..ignore him. You will have to communicate with him and he with you. However, you are NOT looking for a best friend; you are looking for the one with the best clinical expertise and outcomes. Many reviews that I have seen talk about waiting times and how rude the receptionist was. Irrelevant.

If you let us know where you live, maybe someone knows some of these doctors.

Hard work, but you will find the right one.

Sara Anne

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

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3 years 1 month ago #49855 by Jopo
one more question, if you don't mind?
I can self refer to a specialist. My insurance gave me a list of providers ... How do you choose? What should I look for? Do I call and ask? I have Googled most, ugh. The Urologist my GP recommended does NOT have good reviews. This is very difficult.

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