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Not diagnosed, just worried

3 years 5 months ago - 3 years 5 months ago #50003 by Alan
Don't know much about Mayo/Jacksonville other than the name Mayo or course, is well respected. You are on the right track by consulting a URO that sees a lot of urinary tract cancers and diseases: bladder and kidney. The Docs that do mostly prostatic simply don't have the experience as so many of these have subtle nuances. Like most potential problems, uncovering them early usually gives better outcomes. Heck, we don't even know if you have cancer-there are a myriad number of reasons for hematuria. Please tell us you have an appointment!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 5 months ago #49996 by LauraJose
Thanks for your strong encouragement. No, I did not call the doctor today (Monday) because after a long holiday weekend there is always so much work to do to catch up. (I do know that is not a reasonable position to take. It is just I am half scared of finding out bad news, and half scared of not finding out soon enough. The mind is a wonderful ally and a daunting foe.)

I am resolved to call the Dr.'s office tomorrow and explain that I am having such frequent visible blood in my urine.

I live in St. Augustine Florida. The urologist I have been referred to appears to have more of his practice in prostate matters. I am thinking of getting a referral to the Mayo Clinic in Jacksonville. Does anyone know anything about that facility?

Thanks.

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3 years 5 months ago - 3 years 5 months ago #49994 by Alan
Laura,

You do not want to wait. While there are other reasons for blood in the urine, you know this is not normal. I passed "gross hematuria" (visible blood) just once because I didn't want to wait. My GP saw me that day. After a week of antibiotics (suspected UTI) I was still passing microscopic blood "hematuria". I was referred to a very good URO that knew what he was doing. Tests were all done in a week: cystoscope, biopsy (TURB, and CT Scan. I wanted to know so I could attack back. 7.5 years later I survive along with many on this board. While there are many other causes and some not so sinister reasons for bleeding-even a minute # of cases of passing are sometimes never discovered why-you do not wait!

Please tell us that you have made an appointment!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 5 months ago #49992 by CatherineH
Hi Laura... you are correct in that we are conditioned to just take whatever a doctor says as fact and don't question. What I have learned from my bc and other medical journeys is that YOU have to be your own best advocate when it comes to your health.

So make those calls tomorrow. Let them know this seems to be an ongoing issue and let them know you are very concerned. Ask for an appointment sooner and even though they probably won't have one, at least let them know you are willing to ask. And, who knows they may have a cancellation or another opening.

If the bleeding episodes get worse, or are prolonged, don't wait. Go to the ER where at least someone will check you over. Best wishes and stay with us here in the forum. We are not medical people but we have amassed a large library of experience which can answer many questions.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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3 years 5 months ago - 3 years 5 months ago #49991 by LauraJose
Thanks for the response.

We are conditioned to "wait our turn" and to not disagree with or challenge our doctor's advice, but it is quite worrisome to have a symptom like this and not track down the cause right away.

I have never heard anyone say, "oh, I had blood in my urine for 3 or 4 months, but it went away without any treatment. It's not a big deal."

I mean, we do talk about menopause symptoms, and thinning hair, and age spots on our arms, and a variety of other aches and pains, but I just have never heard anyone casually talk about blood in the urine as no big deal. So, I tend to get a bit worried about this, especially since it keeps on reappearing.


If there are any folks who did have blood in their urine as a symptom of bladder cancer, if they could let me know if it was more of a continuous symptom or if it was intermittent, I would appreciate the information.

Again thanks for the response, and thank you Catherine for taking the time to respond to so many of the people who post questions here.

Laura

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3 years 5 months ago - 3 years 5 months ago #49990 by CatherineH
Hello Laura... Welcome to the forum. Your symptoms are definitely a reason for concern, if only for the fact that it is out of the ordinary. With the frequency you are seeing blood, I would call your doctor tomorrow and let him know that the blood has continued to appear, and especially let them know that you see dark red/brown color. And I would also call the urologist and explain your symptoms to his/her office as well just so they know you are not just coming in for a UTI issue. They most likely will schedule a cystoscopy as a followup to examine inside your bladder.

The important thing is that you have taken steps to see the urologist. Whatever is causing it, the they be able to find out what is going on. There are various reasons that blood might be in the urine. I've never experienced what you are going through, so I'm certainly no expert. Some of our other members are more knowledgeable about this and I'm sure will be replying soon.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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