Need advise

13 years 7 months ago #9928 by mimi
Replied by mimi on topic Need advise
My urologist is very well respected and I trust him implicitly. My daughter works with him in Surgery and says he is the best. Horseshoe kidney can cause Hematuria as can Exercise. I exercise alot and all of my episodes have been after exercise. I have had the Gold Standard for Hematuria Evaluation and everything was clear.

I have called my Urologist office and I am waiting for them to call me back to see what is next. My Uro will be very thorough.

I know that there is always the possiblity of BC, but I think further testing would be in order before seeking another opinon.

How many of you did not have your cancer found during the Cystoscope? Just curious.

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13 years 7 months ago #9932 by mznoregrets
Replied by mznoregrets on topic Need advise
Hi Mimi,

I had hematuria start this time last year.
Had a scope in mid December 2006 - saw nothing.
Continued gross hematuria.CT scan mid Jan showed nothing.
Scope done Jan 29, 2007 - saw something.
TURBT Jan 31 - T2 grade 3 micropapillary.
I was treated at Mayo's in Minn after that. I was just told last month I will have 3 month checks for 3-4 years as my cancer was aggressive and like a freight train. I had another TUR on 2/14 to get margins and biopsy bladder neck. Had RC on 3/13 and it was T3 at pathology.
Not sure if anything I did went normal lol - I also had urachal cancer - belly button , very rare. Best of luck, Holly

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13 years 7 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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13 years 7 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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13 years 7 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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13 years 7 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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