Doc hasn't relayed TURB results!

15 years 10 months ago #17703 by momof4
Replied by momof4 on topic Doc hasn't relayed TURB results!
Cattailgirl,

"EDITED"
I think your mom should try to get another Dr at Vanderbilt or here in NC...She needs a good uro-oncologist to look at her slides/ and records...If only for peace of mind...they could very well say that the other Dr is correct...but what if he isn't? It just isn't worth the risk...

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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15 years 10 months ago #17702 by CattailGal
Replied by CattailGal on topic Doc hasn't relayed TURB results!
I am trying to compose an email to send to my mother's doctor. I do not know why he did not check her upper tract - we are worried that the positive results are coming from there. I will ask him to reread the CIS slides from her local doctor/lab.

When Mom had the procedure done, she was only "under" for twenty minutes! In the past, with her local doc, it was much longer. I am not even sure the doctor took biopsies (although he did say to her that he would do "more biopsies later"). He said her bladder "looked good", and he didn't "see" residual cancer.

She asked about the clinical trial of new medication he'd talked about earlier, but he said without "having" cancer, she'd not eligible for the trial (so more BCG only).

Mom has had superficial tumors (5 years ago) and has had slides showing CIS (1-2 years ago). Since then, the biopsies are okay, but the urine tests are always positive.

We are very confused and worried...

KC

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15 years 10 months ago #17680 by Julie
Replied by Julie on topic Doc hasn't relayed TURB results!
KC, my husband had cytologies that showed malignant cells, and a Fish test that was positive and no cancer turned up in the biopsies. Me moved and the new Dr. is the one who looked in the ureters and took a brush biopsy and found that the CIS was in the upper tract.
Your Mother's ureters and kidneys need to be checked if she is having positive results on her urine tests. Get another opinion and someone who will follow through with what they said they would do. Julie



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15 years 10 months ago #17647 by Patricia
Replied by Patricia on topic Doc hasn't relayed TURB results!
I have a question......where did the CIS go? Is it hiding. Could he not see it? I'd definately have the original slides re-read by Wake Forest. Will insurance pay for that?
an article from The Cleveland Clinic on False Positives.........

1) Cleveland Clinic Urological Institute, Andrology-Oncology Research Laboratory and Biostatistics and Epidemiology, The Cleveland Clinic Foundation, Cleveland, Ohio, ETATS-UNIS

Résumé / Abstract
Purpose: While detecting bladder cancer, bladder tumor markers demonstrate improved sensitivity compared with urinary cytology but the current limitation is the low specificity and positive predictive value, that is high false-positive rate. We examined the clinical categories of the false-positive results, established relative exclusion criteria, and recalculated the specificity and positive predictive value of this assay with these criteria. Materials and Methods: A total of 608 patients considered at risk for bladder cancer presented to a urology clinic and submitted a single urine sample. Of the 608 patients 529 (87%) presented with de novo hematuria or chronic voiding symptoms without a diagnosis of bladder cancer. There were 79 (13.0%) patients being monitored with a known history of bladder cancer. Each urine sample was examined via cytology, urinalysis, culture and NMP22 protein assay. All patients underwent office cystoscopy, and transurethral resection and/or biopsy if a bladder tumor was suspected. Results: Of the 608 patients 226 (37.2%) presented with microscopic hematuria, 143 (23.5%) with gross hematuria and 239 (39.3%) had chronic symptoms of urinary frequency or dysuria. There were 52 (8.6%) patients who had histologically confirmed bladder cancer. Of these 52 cancers NMP22 detected 46 (88.5%), whereas cytology identified only 16 (30.8%). When atypical cytology was considered positive, cytology detected 32 (61.5%) cases. In the 135 patients with increased NMP22 values the 46 identified tumors were accompanied by 89 false-positive values yielding a specificity of 83.9% and a positive predictive value of 34.1%. These false-positive results were divided into 6 clinical categories. Exclusion of these categories improved the specificity and positive predictive value of NMP22 to 99.2% and 92.0%, respectively, yielding results similar to urinary cytology (99.8% and 94.1%). Conclusions: Awareness and exclusion of the categories of false-positive results can increase the specificity and positive predictive value of NMP22, enhancing the clinical use of this urinary tumor marker

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15 years 10 months ago #17641 by Gene Beane
Replied by Gene Beane on topic Doc hasn't relayed TURB results!
I am confused, but I think this is good news. The actual diagnosis is WHAT???
She had a TURB? It is negative for invasive bladder cancer, yes? iF THATS THE CASE IT IS GOOD NEWS..I would get a second opinion from another surgeon there on the whole situation..if your unhappy with his protocol then you deserve a new recommendation!!!! Ginger

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15 years 10 months ago #17640 by CattailGal
Replied by CattailGal on topic Doc hasn't relayed TURB results!
Mom heard from the doc. He said her bladder didn't look bad and did not show residual cancer. He did not look into the kidneys or at the uretha (not sure why he didn't - going into the procedure he said he would).

Her urine test was positive for cancer. He said the pathology was negative for dysplasia nad negative for cancer. So he didn't "find" cancer, but the urine test was positive, as it has been for months now. She asked if the cancer could be outside of the bladder, and he said he did not know.

His advice is to watch her closely and do more biopsies in the near future, 3 more weeks of BCG and more urine tests. He said he didn't recommend taking her bladder, when he's not sure it is in her bladder. He said urine tests can be wrong, but again and again urine tests always come back positive for cancer on Mom.

She had a CAT scan of her kidneys 2/08 - clear. He said imaging is not always perfect. He'll repeat it in a few months.

The Wake Forest doc Mom consulted with wanted to "reread" the slides done here diagnosing CIS, but this doc didn't mention it.

I guess this is good news. Watch and wait...

Thanks everyone!

KC

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