Starting with tests

10 years 10 months ago #44750 by dctx
Replied by dctx on topic Starting with tests
Update: Had the CT scan very soon after my post and made an appointment with a urologist. CT with contrast didn't show anything. The earliest appointment with the uro was for today so I am due for an exam this afternoon.

It turns out that my internist's father has bladder cancer and the uro that I am going today is the one treating/operated on him. I think at least it is somewhat good news that he is a urologist trusted by another doctor.

In any case, I'll post an update once it happens. Meanwhile any suggestions on things that I should make sure I ask the urologist? Does anyone know if Baylor, Dallas has a decent reputation for bladder cancer?

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10 years 10 months ago #44684 by GKLINE
Replied by GKLINE on topic Starting with tests
Welcome DC
We all can't wait to kick you out. You really don't belong here and we don't want you.
We would really like you to say SEEEEEEE Ya! and go on with your life.
We love to talk bathroom humor here.
We are all trying to help you leave with a smile on your face.

Please make sure you find a urologist that specializes in bc. This is the most important step in the war on bc. There is a definite plan of attack here and it must be followed. First the scope.... you can even watch your bladder on tv as they do it. And then the pathology report will tell even more.
If they need to proceed from there, they will follow a plan of minor surgeries known as TURB.

A lot of us here have been through the gamut of bc, and we are here to tell you ............ We are still here........ AND we are going to stay here.
And so will you!

Right there with you
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]
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10 years 10 months ago #44680 by dctx
Replied by dctx on topic Starting with tests
Thank you, Sara Anne for hoping to exclude me from the group!

It is amazing to hear how it takes so long to diagnose women because of menstrual issues and because of our tendency to get UTIs. I had slight abdominal pain for several years and went to a gynecologist for that in 2010 but nothing showed up on the CT scan then. She had given me an antibiotic then, in case there was an infection she couldn't find. At first it had felt great but the pain had come back after a while. Maybe that's related to what's going on now.

Thank you so much for reaching out to help, thanks to you all, I am able to see through a diagnosis much more calmly. (Although I can't promise not to flip out once a diagnosis is made.)

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10 years 10 months ago #44668 by sara.anne
Replied by sara.anne on topic Starting with tests
DC, I will echo Mike and welcome you, but hope that we are able to eject you from our very exclusive club!!!

The problem with women and bladder cancer is just as stated above. My internist never orders a urinalysis..."doesn't tell me anything." And, looking for cancer cells in urine is like the needle-in-a-haystack....I have never had any, and I have had bladder cancer!!

I kept having UTI's. Over and Over and kept getting prescriptions for an antibiotic. I went to a women's clinic for an overdue pap, and the nurse practicioner I saw told me that if I had more than three UTI's in a year I needed to be seen by a urologist ....and she gave me a list of OK urologists and some not OK ones!! About a month later, another "UTI"...but no bacteria. Went to the urologist...and the rest is history.

Best of 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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10 years 10 months ago #44665 by dctx
Replied by dctx on topic Starting with tests
Mike,Catherine,

Thank you so much for your messages and thank you for comforting me, saying that even if the news are not good, it is very treatable.

So far you are the only people that I felt this good talking to. I can't believe that there is such a great group here. At times, this is probably just as important as having the support of one's family. I can't say this enough. It is a very different feeling to be talking to people who are knowledgeable about this but who do not have the (inadvertently) detached perspective of a doctor.

I will take your advice and go see a urologist asap, even before the CT. My doctor's nurse was supposed to call me today for a CT scan appointment but she hasn't yet. I should start looking for a urologist on Monday. I am in Dallas, TX. If anyone knows a good urologist around here I'd appreciate the info for the doctor.

Once again thank you! I will keep posting when new information arrives.

Wishing everybody all the best :)

DC

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10 years 10 months ago - 10 years 10 months ago #44664 by CatherineH
Replied by CatherineH on topic Starting with tests
Hello... I read your post with much interest because I very recently had a friend who went through a very similar situation. Her doctor (ob/gyn)kept telling her it's just probably a UTI and did little to check her symptoms beyond a urine test after months of light traces of bloody urine. One night she had to go to the ER with a lot of blood and clots and the ER doctor again hardly took notice of the sample she brought along with her. After finally going to a good uro, she was diagnosed with non-invasive, low grade which is best case scenario if a person is diagnosed. Let me stress, this may not be you, but you need to know as soon as possible.

If the doctor you are seeing is not a urologist (which I assume she is not), get an appointment immediately to have a cystoscopy that lets the doctor see inside your bladder. That can be done before a CT is ordered to see if there is an issue there. It is usually only mildly uncomfortable (less so than a PAP test) and takes less than 5 minutes after you are prepped.

It is a sad documented fact that many, many doctors have little knowledge of bladder cancer and do not pursue that as a possibility. It is even worse for women because their bleeding issues are often ignored. I am not suggesting you have bladder cancer and don't want to scare you needlessly, but this doctor has already taken so long to refer you to urology that she has lost credibility as far as I am concerned.

OK... now IF it is discovered that you do have bc, emphasis on "IF", you need to focus on knowing that it is very treatable. There are many members here to attest to that.

So welcome... it is never too early to hang out here. We are very happy you brought your questions to us. Please let us know how things go.

Best wishes... Catherine

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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