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Doc hasn't relayed TURB results!

11 years 4 months ago #17813 by Julie
KC if the urine tests shows malignant cells i would not think it is a false positive. If it the FISH test than it is a little more likely it could be a false positive.
I hate to harp on having the upper tract checked but after BCG Dick's CIS did not return to his bladder. After 5 years a low grade papillary tumor was in his bladder but the CIS was in the upper tract. If they can't find malignancy in the bladder and yet there are positive urine text. The next place to check is the upper tract. Dick's Doctor did not want to spread CIS from the Bladder to the upper tract but it found it's way there.
I don't know how but I suspect he had some reflux from his bladder back up his ureters. There is a test to show if there is reflux. It is an imaging test.

It did take Dick longer to recuperate after they went up into the ureters and did a brush biopsy which came back positive for CIS. I don't know Vanderbilt's reputation re bladder cancer. It seems to be important to find a doctor who specializes in bladder cancer and then if possible one that has experience in treating women.
I can understand feeling confused. You are not getting a response that says "i'll check until we find the source of the malignant cells." Julie

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11 years 4 months ago #17796 by CattailGal
The CIS was in Mom's bladder. She had the CIS "velvety spots" removed and had 6 weeks of BCG, and FISH test came back negative for cancer. A year or so later, another urine test was positive for cancer. She had 6 more weeks of BCG - still positive. Then 3 more weeks of BCG with the second drug. Still positive. Local doc didn't go back in to look - she went to Vanderbilt, and here we are...

The doctor at Vanderbilt doesn't know if it's a false positive or she will later actually have the CIS (per visual exam or biopsies, I suppose). Right now, the visual exam and biopsies show nothing.

It's very confusing for us.

KC

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11 years 4 months ago #17774 by Patricia
Where was the CIS located? The doctor claims it is no longer there? Forgive my confusion...........Pat

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11 years 4 months ago #17770 by Gene Beane
Kathleen,
Well either your bladder needs to come out or not. I wouldn't think a surgeon would take it out just because you want him too. The tests should show the diagnosis as to whether its needs to go. At 79 I would think if surgery can be avoided then thats great. As long as its not going to be a risk..whats the risk??
THINKING OF YOU AND YOUR MOM, Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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11 years 4 months ago #17758 by CattailGal
I emailed the doc, who returned my call early this a.m. He said he did not go in the kidneys because it is more traumatic, Mom had just had a CT scan 2/07, there isn't anything to biopsy in the kidneys so only visual exams can be done, and cancer cells can be brought into the kidney area from below. He did order the slides from her local doc, and he did confirm CIS from the slides.

He said he she should be closely monitored, but he didn't advise removing her bladder now. However, he said if she's really worried about it, he will remove the bladder. She has another appt 8/14 for a repeat CT scan and urine test (which keep coming back positive anyway). She'll have three weeks of BCG beforehand.

KC

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11 years 4 months ago #17704 by Julie
In my experience Doctors will tell you they cannot treat what they can't demonstrate is present. The positive urine cytology is not sufficient. My husband had retrograde pyelograms and IVP's and biopsies that did not show anything but still had positive results on tests. It wasn't until another Dr. looked at his ureters and renal pelvis that they found CIS there.
Upper tract bladder cancer is supposed to be very rare but it does happen. We don't know how long the CIS was present in the upper tract but however long it was it was long enough for it to metastasize. I am now of the opinion that if there are positive cytologies that show malignant cells than the Doctor needs to look until he finds the source. As you can tell I am influenced strongly by what has happened to my husband. Other peoples experience may vary but after reading peoples testimonies regarding their bladder cancer for 7 years I have learned that it is better to have the bladder out before the cancer escapes the bladder. Julie

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