Starting with tests

10 years 11 months ago #44660 by mmc
Replied by mmc on topic Starting with tests
Not too soon at all! Of course we reserve the right to deny your membership in the club if you don't have bladder cancer. Which we all hope that it is something benign.

Women are OFTEN not diagnosed until later because doctors and patients write off the blood as being menstrual.

Beyond the CT, you want an in office cystoscopy. There are often things that can be seen with the scope that would not show up on a CT. Be sure to tell the urologist you want that done asap.

Fingers crossed that it is not bladder cancer! But if it is, you are still VERY LIKELY to be in the VERY TREATABLE stage.

Don't get too attached to the urologist you go to. The reason I say that is, depending on the diagnosis (stage and grade) your next step will be to get lined up with a bladder cancer expert urologist. We can help you figure that out if that is the path you need to follow.

So either way, we have your back!

Best,
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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10 years 11 months ago #44653 by dctx
Starting with tests was created by dctx
In the past 8 months or so I had my 3rd sample with blood. The first time it happened I had been to my physician with the complaint that I had to go to the bathroom too often, it took forever to get just a little bit of liquid out, and when it finished I still felt like I needed to use the bathroom.

She listened and said that it is normal for things like that to change after 40, and I was probably having a hard time adjusting. Then there was blood in the urine. She told me that on the phone saying that it was probably because the sample was taken only a a couple of days after my period so why don't I go back to give another sample at my leisure?

Not hearing any sense of urgency in the doctor's words, I postponed it until my next physical. I hadn't heard anything about what that could mean and yes it was too close to the end of my period and my doctor would have shown at least some concern if there was something serious. I also felt a little bad about being the 45 year old woman who had difficulty adjusting to her age and changing body.

Well, then I went for a physical last week. She didn't ask me if my bladder issues were resolved but then I saw on my check-out report that she had removed that as a problem. The next day she calls me to say there is again blood in my urine but then again it is too close to the end of my period so I shouldn't worry but I should leave another sample. And so I did.

You can probably guess the rest...blood again. So she called to say that she checked for cancer cells in the sample and there wasn't any but we should start with the CT and urologist route. She said that it could be kidney stones.

Now, I am quite sure that I don't have kidney stones. Although I almost constantly have a very slight abdominal pain, I don't have any severe pain, and I don't have pain in places that are normally associated with kidney stones. I read that it is possible to have kidney stones with no symptoms, but for 8 months AND no symptoms?

Based on what i read on the internet so far, assuming no stones and no bacterial infection (she checked for that), there is no way that hematuria for more than 8 months could point to something simple. Maybe something benign but not super simple.

I am very concerned right now but almost paralyzed, I can't really feel a thing. I know I shouldn't jump to conclusions but it seems very logical that there is something. I am praying that it is benign, but then again do they ever know for sure.

It is really not like me to have not followed up on this the first time, even when the doctor acted like I was a hypochondriac and it was all in my head. Now I am worried that I've lost such precious time.

Sorry if my stage is too early or indeterminate to post here. My situation is certainly not as important as those of you going through it. But I am quite shaken at the moment and I think everyone here must have been through this initial stage that I'm going through now. Any advice going forward would be much appreciated. I've looked over the forum and was amazed at the courage and the optimism of the posters. It was so inspiring to see the support given to the newcomers by the people who had already been through the process.

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