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Idiopathic hematauria had tests but scared
Hey guys first time here little background on what I’m going thru. I am 39 years old and went to er with really bad back pain on right side well they did Ct scan and everything came back clear but uterer on right side was stretched open like maybe a kidney stone had been there also they found microscopic blood in urine. Not really worried about it at first and was referred to urologist for further examination. Blood was still in urine and bam first thing he says is we are going to check you for bladder cancer, well the type of person I am it put me in complete frenzy two weeks later we do urine cytology contrast and non contrast ct scan and cytoscopy. All of these came back clear, this was April the 3rd of this year. Fast forward to now still have microscopic blood in urine. Went to urologist and did another urine test if no bacteria is found going in for another cytoscopy and I am really beside myself ruining my marriage and my relationship with my kids because I am crying all the time. Just really scared and concerned about the future because they are my life and they are all I think about any info or anything would be appreciated.
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6 Replies
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Totally understand, I am in the same boat. CT scan, urine cytology, cycstocopy, etc. Everything was normal. With gross hematuria, which I assure you was enough for me to be unglued, it was hard for me to enjoy the holidays. I tried and my husband knew what was going on, but tried to keep our kids, (college, grad school) out of the loop until good results came in.
So, from my reading we should be thrilled right. I am happy that they did not find anything, but have had another episode, albeit just once and it takes you to a dark place. Certainly I will be contacting the Dr. when we get home from our vacation, of course it happened on day 1. What new bunny will he pull out of his hat? I had cyscotpy 2 weeks ago. This is a maddening circumstance and I hope you have peace of mind knowing it could be a lot worse and we should be happy. And yet…., I worry.
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That’s what I’m trying to do is move on, some days it’s better than others but like I said it has been since march that I have had this microscopic bleeding just wanting to find out the reason. Kidneys are working fine ct scan with contrast shows no stones or tumors only thing it’s shows is a 2cm upper renal cortical cyst.
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JHH,
As Sara Anne and Jack said it is probably time to move on in your life. I know TWO people that have occasionally bled in their urine and they NEVER found a cause. Sometimes it is simply our system. 25 years ago my wife even had an unknown cause for microscopic hematuria for a couple of weeks. She did have a “retrograde pylogram (sp?)” to check and maybe this is one last that looks into your kidneys but, this is an invasive test. Your doc should know if this is even worthwhile.The thought was she may have passed a small stone
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.
Jhh,
Consider yourself lucky to have a doc who chose to rule-out bladder cancer so quickly. Too often, the earliest possible (though unlikely) symptoms are completely ignored for months.
You have had a thorough work-up, and the doc finds no indication of cancer. REJOICE, and remain alert to any unusual changes in urinary habits and/or presentations. Get your annual physical and labs, stay up on vaccinations, and aim to be fit and healthy.
Your family needs YOU. Your cancer scare would seem to be over. Hug your wife and kids, and celebrate the good news.We all have just one day at a time – Make the most of yours.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Thank you!! the blood has never disappeared it has been there ever since march that I knowalthough is microscopic. he said it was idiopathic since all the tests came back normal but I guess my question was if everything came back normal why am I bleeding. Just questioning if something was missed. You are probably right I am overthinking it but, all I can think about is my kids who are 4 and 10 I want to be here to raise them and see there life unfold
We moved your post to this category since the one you posted to, “How to” is exactly that….how to use the Forum. More people who can respond to you will see it here.
First of all, take a deep breath and try to relax. Easy for me to say!!! There are a gazillion reasons for blood in the urine and only one of them is bladder cancer. Even dehydration can cause it. In many cases a reason is found and the cause is treated; in many cases it just disappears and is never seen again. You are over-thinking this.
Yes, if the blood reappears you need to get to your physician. But it is NOT an automatic sign of doom. Even if it were bladder cancer, it is most often highly treatable. And it probably isn’t.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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