Need advise

13 years 7 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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13 years 7 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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13 years 7 months ago #9979 by mimi
Replied by mimi on topic Need advise
I have an appointment with my Uro in the morning at 8:00 a.m. so we will see where he wants to go from here. I am in Central Mississippi. There are no major centers close to me, but UAB is in Birmingham. They are a fantastic teaching and research hospital. I also have Vanderbilt, Emory and MD Anderson within a 10 hr drive or short flight. I also think there is a MSK in Jacksonville Fla which would be about 10 hrs away also. I do not live in a big city nor do I live in a small city. LOL We have 3 regional hospitals and a cancer center here in our town, but I would want to go somewhere that has more experience in dealing with this should the need arise.

My other question is on insurance. My insurance is BC/BS of Mississippi which means that I have to use providers in this state. How does your insurance work when you go out of state to places like Sloan Kettering????

Oh, and I had the CT Scan with and without contrast.

Mimi

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13 years 7 months ago #9991 by Patricia
Replied by Patricia on topic Need advise
Mimi i have BC/BS but i have the PPO plan which is more per month but it allows me to pick my own doctors and go whereever i want and all the major cancer hospitals are in the network. The U.of Alabama at Birmingham is part of the national comprehensive cancer network but i didn't see very many docs that specialized in reconstruction surgery or bladder cancer...www.uabhealth.org/10360/?directory-query=*&filter-by=4215.....its a pretty specialized field especially for women..look through the directories of each of those hospitals you mentioned..you'll be amazed at how many times you see prostate but not bladder. If the need should arise we can guide you to the best if travel is no problem. Pat

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13 years 7 months ago #10023 by wendy
Replied by wendy on topic Need advise
Hi Mimi,

No, hematuria is almost always something aside from bladder cancer and that is why screening is not 'cost effective' in the general population, but only in high risk people who fit the profile (men, firemen, smokers). But...it is a guideline that every case of hematuria must rule out bladder cancer because it is one of the most common symptoms.

Good chance your problem is not cancer related. Didn't they do a urine cytology test? A FISH test is even better but harder to get and more expensive, but it couldn't hurt to try! Cytology is the standard test for dxing blc.

I live in Europe and don't know much about insurance issues or about experts in Mississipi. I think you mean the Cleveland Clinic that's in Jacksonville? Tampa's Moffitt cancer center might be even closer.

There are links to financial advice and aid for cancer patients on the main site here, if you might need them
blcwebcafe.org/financialresources.asp

Good luck with everything and let us know how it goes.
Wendy

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13 years 7 months ago #10062 by mimi
Replied by mimi on topic Need advise
Thanks Wendy and Pat.

Yes Wendy, Cytology was done and was negative as was the Renal Ultrasound, CT Scan and Cystoscopy.

I saw my Uro this morning and my urine was clear. Not even a trace of blood. This has been the case every time. My episodes never last longer than 1 voiding and are months and months apart. My Dr. and I had a very long talk. They re-read my CT scan and Renal Ultrasound...still nothing. We discussed the fact that I do have a Horseshoe Kidney. Hematuria is a symptom of Horseshoe Kidney. The Hematuria is caused from several factors with the Kidney.
1) It is not in the usual position nor are the blood vessels in the normal postion.
The tubules do not connect in the proper place either.
2) The position of the kidney makes it vulnerable to jarring and moving. Since I run
alot and am very active my kidney gets jarred around causing some leakage.
3) Horseshoe kidney's are prone to stone formation and sludge buildup in the tubules
due to improper draining and reflux.
4) The older I get the more likely this is to happen.

My Uro feels that my Hematuria is from the Horsehoe Kidney. I tend to believe the same since I only have this when I really workout hard. BUT, to be on the safe side I am going to get a second opinion from UAB. If the second opinion agrees with my Uro's opinion then we are going to repeat the CT Scan and Cytology in a couple of months just to make sure that nothing was missed. If these all come back negative,then I will be checked every 3 months thereafter.

Does this sound okay to all of you?

Kathy

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