Idiopathic hematauria had tests but scared

6 years 3 months ago #54579 by Elle1356
Replied by Elle1356 on topic Idiopathic hematauria had tests but scared
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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6 years 8 months ago #53841 by Jhh1
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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6 years 8 months ago - 6 years 8 months ago #53838 by Alan
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.

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6 years 8 months ago #53837 by Jack R
Replied by Jack R on topic Idiopathic hematauria had tests but scared
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

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6 years 8 months ago #53836 by Jhh1
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

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6 years 8 months ago - 6 years 8 months ago #53835 by sara.anne
Replied by sara.anne on topic Idiopathic hematauria had tests but scared
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
Forum Moderator

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