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Scared and Confused

11 years 10 months ago #42274 by rbmc
Replied by rbmc on topic Scared and Confused
Your concerns sound very valid. I hope things get straightend out ASAP, and you can proceed on the right path for your situation. Sharing the progress of your story may help others here too. Best wishes to you.

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11 years 10 months ago #42252 by twauson73
Replied by twauson73 on topic Scared and Confused
Yes the new Doctor said we are automatically gonna start with the 3 month check-ups whether they find something or not after he scopes my bladder when the Insurance gives them the authorization. Like he said being that I was already diagnosed in Oct.2010 and they removed a tumor, it's better to be SAFE than SORRY!!!! But yes I will keep y'all posted!!! Thank You!!!

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11 years 10 months ago #42250 by CatherineH
Replied by CatherineH on topic Scared and Confused
Hello and welcome to the forum. The situation with MD Anderson does sound untypical for them and I really don't know what to say about that. I hope your new doctor can shed some light on what is going on.

There is also an option that you can have your slides sent elsewhere, like Johns Hopkins in Boston, for a pathology review. If things are not sorted out, perhaps that is something you might consider as well.

Please let us know what your new doctor has to say about it all. Don't panic yet... communicate your concerns to your doctor and INSIST (assuming they confirm the presence of BC via a TURBT) on getting checked every 3 months for at least two years, and every six months after that. That is the recommended guideline for BC patients who do not undergo radical cystectomy.

A study recently released revealed that a very high number of BC patients do not get the recommended standard of care largely due to the doctor they see. Not all urologists are experts on bladder cancer and you need to find one that definitely is! We have a list on the Home page of hospitals/centers we believe to be well qualified for treating BC if you want to pursue other opinions.

Please feel free to post any other concerns/worries/questions here.
Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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11 years 10 months ago - 11 years 10 months ago #42242 by twauson73
Replied by twauson73 on topic Scared and Confused
MD Anderson only did a urine and blood test. And they requested the old Biopsy were the Turbs was already cut out from the first doctor. They said it was abnormal but not Cancer. My urine and Blood both come back clean even when the Turbs came back positive. I don't know if they got the wrong Biopsy or what. The first Doctor that was treating me did 6 other Biopsies right before she treated me with the Mitomycin and they did come back clean.

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11 years 10 months ago #42241 by GKLINE
Replied by GKLINE on topic Scared and Confused
I am surprised to hear that MD Anderson made a diagnosis without a scope and pathology report. Very unusual and cavalier of them.

Any diagnosis without a scope and TURB and a follow up Pathologist report of their lab findings....... is just a Guess!

The proper procedure is a cystoscope..... followed by a TURB resection (where they take out any and all tumors and send them to the lab to see if it is cancer)
And then a second TURB to see of there are clear margins. If not....the next step is BGC or a Radical Cystectomy.

Don't panic. Make sure there is a proper procedure followed and a proper recovery on your part.

Just follow the steps to recovery.

George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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11 years 10 months ago #42238 by twauson73
Scared and Confused was created by twauson73
I was diagnosed with Bladder Cancer in Oct. 2010, went through a Mitomycine chemo treatment, which was very painful. My Doctor that treated me refused me any treatment until it was time for my 3 month Check-up. Feb. 2011 My GP doctor sent me to MD Anderson in Houston, TX. They requested my old biopsies and told me I never had Cancer, it was a Misdiagnosis, but when it came down to it MD Anderson refused to back their findings, they said it was their opinion. I don't see how Cancer can be an opinion!!!! Now it's June 2012 and I am Still having problems with Bladder I found another Urologist and was told there were multiple patholigist at one place that said it was positive for Cancer and only one pathologist at MD Anderson that said it wasn't.
Come to find out I should have been getting routine check-ups for the last year and half, and now I am terrified to death!!! I am just waiting on Insurance to approve the New Doctor to scope my Bladder!!!!

Has anybody ever heard of a situation like this!!!!

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