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Please Help me understand! So very scared.

2 years 4 months ago #51797 by purrrkat
If I were you, I would definitely try to get an earlier date. I would insist that with a potential cancer diagnosis, timing is very important.

Good luck

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2 years 4 months ago #51792 by SteveS54
Thanks everyone for the sound advice. I went to see my Urologist this morning. She put me in for s Cystoscopy. They do not do it at the facility i go to. I spoke to the staff who perform the Cystoscopy this afternoon. The Doctor wants a urine with culture and another scan. Then they will perform the Cystoscopy.

Here is my dilemma. My appointment is September 15th. Thats another month i get to wonder about this.

I am a VA patient as some have guessed. Should i make a fuss about the delay? I am not happy about this.

Thanks,

Steve

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2 years 4 months ago #51769 by purrrkat
Hi Steve!

I'm SO sorry for your situation. Cancer, whether one actually has it or not, is an emotional BULLY.

But let me offer you some perspective. I recently had a "scare" with my urinary tract. Back in June, I had 4 separate incidences of gross (visible) hematuria (blood in urine). I immediately went to my GP, who confirmed that indeed, there was blood in my urine,ordered blood work, a CT scan with contrast, and a referral to a urologist.

I got the bloods and the CT done right away, and both came back normal. I was SO relieved! The only thing left was to see the urologist, but I wasn't worried. I really didn't think there was anything in my bladder.

First off, let me interrupt my tale to tell you that I agree with Sara Anne. It's absolutely ridiculous that they wouldn't perform a cystoscopy because of the "amount" of blood. NO amount of blood is normal, though I have read that gross hematuria is a more ominous symptom than microscopic.

Anyway, I finally had my urologist consultation, followed by a cystoscopy 2 weeks later, where...They found a small tumor near my left ureter that the doc characterized as "suspicious." I was TERRIFIED.

Long story short, I had a TURBT as Sara Anne described, and the pathology came back as "cystitis cystica"--a benign, inflammatory condition. This was quite a relief, and here is what YOU can take away from this:

1. I had my post-surgical follow-up a few days ago and the urologist told me that the cystitis cystica was an "incidental finding" and that he doesn't believe that it caused my hematuria.

2. He also said that in roughly 40-60% of cases, they NEVER find the cause of hematuria. The point of all the testing is to rule out cancer or stones, and once that's done, it's just considered benign/idiopathic hematuria.

3. This is the most important thing: Stop torturing yourself with Dr. Google. When it comes to Dr. Google and hematuria, all roads seem to lead to cancer. I tried repeatedly to find that one piece of data on the web that would bring me comfort, and I never found it. My incessant "research" just made me more terrified. If you go back several posts here you will find one where I publicly declared here that I was going to cease my internet research and stick to this board exclusively. In the absence of actual test results from your doctor, there is more collective knowledge on this forum than anything I found outside of it, and there's boatloads of support to boot.

You're already on your path to a diagnosis and, if needed, treatment. You're doing all the right things to heal and get answers. Keep moving forward and keep coming back here. That's my personal recommendation for calming your mind.

Please keep us posted.

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2 years 4 months ago #51767 by GKLINE
Steve
I didn't want you to go thru the weekend in the "fearful" frame of mind that you are experiencing right now.
In my layman's terms I think the only way to get a REAL picture of your condition is the Cystoscope (they are going to put a camera into your bladder and take a look. You will be able to watch too) All of those other tests don't give the Dr a real picture.

But right now you are only 50/50 in the cancer arena. So stop and take a deep breath. Even if there is a chance of cancer, you have many options of care. There are people here who have been through all sorts of surgeries and treatments and we are still here !

To give you a little levity (You will need a sense of humor to get you thru) My Dr. joked that the camera they used was a Kodak Instamatic with a flash cube and all they have to do is slide it in there and take a look. It really only hurt when the flash cube rotated.

Best of luck Monday
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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2 years 4 months ago #51763 by sara.anne
From your report, I suspected you were a VA patient! You are really going to need to fight for what you need.

There is a lot of information here on our web site....on the Forum as well. Go to our Home Page and, at the top, click on HELP. There are a number of links to good information about bladder cancer.

Sara Anne

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

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2 years 4 months ago #51762 by SteveS54
Thank you Sara,

Your information is a big comfort. I have been trying to google information and i just get more and more confused.
I am being treated at my local VA. They have an outside Urologist that is my Doctor.

Thanks so much,


Steve

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