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Well............this can't be good

1 year 1 month ago #57531 by TigersFan
Thank You very much. I am hoping for the best but expecting the worst. I think the worst part about this situation is that I tried to "be involved in my healthcare" and I literally got laughed at and treated like I was just overly worried. I go to the VA for all my healthcare needs (which usually aren't many) not because I don't have a job but because I prefer to be treated by those that were in the military because it is more of a trust issue (my doctor wasn't in the military). I asked about microscopic blood in my urine and was told "its no big deal." About a year later I had more (a greater amount) microscopic blood and was told the same thing. I went and got a second opinion from another doctor outside of the VA, and he literally called my VA doctor and said give him a test to figure out where this blood is coming from. I ended up getting a kidney ultrasound that day and the results were good. A few days later I met with my VA doctor who seemed pretty upset that I went somewhere else for an opinion and made me feel foolish for doing so. I feel this situation could have been resolved or diagnosed months ago.

I suppose in a way you were very lucky with your symptoms because it possibly moved the investigation along quicker. My symptoms are a slight pain in my left back and a little pain in my front left hip (kind of deep feeling) and occasional blood in my urine and twice noticing very small blood clots in my urine. No pain whatsoever with urination even with the clots (they were real small). I am 42 and have been diagnosed with Gout (form of arthritis) at the very early age of 24. I am really hoping for a diagnosis of bladder stones which I think Gout can cause. I also have real difficult to control blood pressure which a renal artery ultrasound was done (along with a full kidney ultrasound) with good results. Tomorrows appointment should definitely be interesting. Good or bad I will definitely keep the group informed on how it goes tomorrow.

Thanks again for the reply and sharing your story.. Best wishes for your health.

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1 year 1 month ago #57530 by Jjbrown
Good luck on your scan tomorrow. I know the anxiety must be at peak level right now but try to keep positive. When I was first diagnosed back in January I literally felt the room spinning. I could not believe what I was hearing. I'm a 47 y/o female non smoker, eat organically ( because my step father's oncologist told us to watch the "3 p's" ....plastics, preservatives and pesticides) so needless to say coming from an oncologist at a major cancer center we will listen to his advice. Anyway, very cancer "aware" even organic deodorant .... it still got me! I am dealing with this diagnosis better now, it does get better. I just have to stay on top of it now and accept it as part of my new normal. If I have to have my bladder removed someday, so be it, many have it worse.
Let's hope yours is something different though. My symptoms were different than yours. My bleeding was constant, not intermittent and I was in so much pain I could barely walk. I was treated with antibiotics for a UTI, which for some reason took the pain away but not the urgency and frequency, which is why ultimately I ended up at a urologist. Thank the Lord above! Bleeding is caused by many different things, which I think is one reason for the CT. I don't think they are only looking for cancer, but stones, blockages etc. So keep your chin up and stay positive, it could be a number of things.
Good luck tomorrow!

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1 year 1 month ago #57529 by Alan
Absolutely you want to see a URO even if the CT scan shows nothing. While there are MANY reasons for blood in the urine, the most usual/garden types of bladder cancer are papillary/mushroom like and CIS, a flat rash like cancer. Kidney stones. UTI's, dehydration, etc etc. are many other causes for hematuria.The CT scan usually wlll not detect the second. Thus a cystoscopy is needed. We all will be happy to have you report all clear soon! keep in mind there are some people they never find a reason for bleeding.

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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1 year 1 month ago #57528 by TigersFan
Thank You for the reply and input. I have my CT scan W/contrast tomorrow afternoon. I do plan on going to a urologist even if the scan comes back good. Seems like the doctor isn't concerned about it...... seems as if I would have been seen sooner for the CT scan since I had visible blood in my urine. I don't know a lot about bladder cancer but the blood in my urine seems to disappear for a few days then comes back (for just one trip to the bathroom, then gone again). Today, I noticed a real small blood clot in my urine. I don't have any pain when urinating at any time. Hopefully it is nothing but I have a feeling that something just isn't right. Thanks again for your reply.

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1 year 1 month ago #57527 by Jjbrown
I just wanted to reply to your post regarding CT scans. Back in January I had gross hematura ( visible blood in urine) and I was referred immediately to a urologist. He ordered a CT along with a cystoscopy. The CT came up clear, the cystoscopy found the tumor. I am imagining it is because it was small....1.7 cm. I am not trying to scare you, but you should really see a urologist even if your CT comes back normal. Bladder cancer is very treatable if caught early.
Good luck and let us know how it goes.

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1 year 2 months ago #57502 by TigersFan
Thank you for your reply. If they CT scan doesn't show anything, I am going to request to see a urologist. I mentioned to my doctor about checking my bladder and he seems as if he isn't really concerned about that and is more focused on my kidney's. I do have a history on uncontrollable blood pressure, and I have had kidney and renal artery ultrasounds done for that which looked good.

I kind of feel as if my doctor really "dropped the ball" on this. Considering I had two urine tests a year a part that reveal more blood in my urine every time. While I am no where near being a doctor, it just seems to be common sense to figure out where blood is coming from and to rule out anything serious.

Thanks again and I will post my findings.

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