Need advise

16 years 4 months ago #9976 by Patricia
Replied by Patricia on topic Need advise
Good question about the hospital...if you're presenting at the time they will certainly see you...mine did and they ran all the usual tests including the CT with contrast which was able to pick up my single tumor which was quite small but very invasive. I doubt they would run any more tests than your uro has already done unless he did the CT scan without contrast. Sometimes a flat CIS tumor cannot be seen apparently. Are you due for another cystoscope anytime soon?
Its obvious you don't have your head in the sand and its good that you're following up all leads. Our bodies usually tell us when something isn't right so just be persistant and get to the bottom of it. Where are you located Mimi?
Pat

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16 years 4 months ago #9974 by mimi
Replied by mimi on topic Need advise
Thank You Pat. The apirin is a baby aspirin. I do not take the ibuprofen anymore. I know that everyone presents differently. I am not trying to hide my head in the sand. I know that BC is a real possiblity, but I do not want to diagnois myself as having BC when I do not know for certain that I do have BC. You know what I mean? I will follow up on this as soon as I can get an appointment. Would a teaching hospital even see me without a diagnosis or a diagnosis of unexplained Hematuria?

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16 years 4 months ago #9973 by Patricia
Replied by Patricia on topic Need advise
Thats great MiMi .. you now probably know more about Horseshoe Kidney than your doctors..its pretty rare. I would take that information to your uro or your internist to get the proper referral just to be on the safe side. And you're right all hematura does not mean bladder cancer. And actually i think all of us would have a different scenario of how blood presented itself with our bladder cancers..i personally had very rusty colored urine for a long time and paid no attention and i only had one case of gross hematura before diagnosis.
Just a note as you referred to taking ibuprofen and aspirin together...thats actually asking for trouble. See reference
www.drugs.com/drug_interactions.php
Good luck with unlocking this mystery ........Pat

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16 years 4 months ago #9972 by mimi
Replied by mimi on topic Need advise
Thank you all for the good advice. As for a seeing a Nephrologist, I will have to be referred. I cannot make an appointment on my own. I could not even get an appointment with a Urologist on my own, referal only.

I need to clear up a few things.
My hematuria is not everyday or even every other day or even more than once a day.
I have had hematuria 1x for 1 voiding about 14 months ago after exercise.
The next episode was in May of this year. 1x on Saturday and 1x on Sunday after strenuous exercise.
The last episode was this past Monday morning. 1x after a hard workout.

I really do not think the ibuprofen/aspirin is a factor. I have taken ibuprofen and aspirin since the episode in May with no bleeding. I think that is a coincidence.
I have also exercised with no bleeding. The episodes of GH seem to happen when I am doing an activity that gets my heart rate very high. Since my kidney is wrapped around my aorta this could be contributing to the hematuria.

From my research of Horseshoe Kidney in the event of an "Isolated Horseshoe Kidney about 1/3 of patients are asymptomatic. When symptoms are present, they are usually related to hydronephrosis, infection, stone formation or Hematuria."

It is possible that the Hematuria is from my Horseshoe Kidney. Also, as in mznoregrets case the time frame from her hematuria to diagnosis was about 3 months even though they saw nothing on the first scan or cysto. In my case it had been over 8 months since my first episode and I had a clear cysto and imaging. Would the cancer not have show up by then or the Hematuria gotten worse?? I am not grasping at straws. I am going to get to the bottom of this. But, I do not think that every case of Hematuria necessarily means that you definitely have cancer.

I am going to see my Urologist again and see what he says and ask about a referral to a Nephrologist and take it from there.

Mimi



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16 years 4 months ago #9948 by Rosie
Replied by Rosie on topic Need advise
I agree with Pat. It would be wise to see a nephrologist. Rosie

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16 years 4 months ago #9943 by Patricia
Replied by Patricia on topic Need advise
If you've had the Gold Standard and your uro saw nothing...the pathologist saw nothing........then a lot of scenarios can take place.
l. Uro missed it
2. Pathology missed it
3. They missed nothing
4. your taking of ibuprofin and dehydration caused it
I'm still voting for the nephrologist consult.
Pat

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