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Recurrent high grade bladder cancer

4 months 1 week ago - 4 months 1 week ago #57030 by Busymom123
Sara Anne I’m a nurse and also a cancer patient myself (not bladder cancer).

I know that they stain these cells very specifically and that the identification here in a cytology wash sample is no different than using pathology to identify a cancer. They are using the same techniques.

I believe the false positives are when they are calling cells suspicious or something along those lines. Not a definitive diagnosis of what the cell actually is.

Jack I truly appreciate your response. We are actively looking now for the best doctor possible. Many thanks.

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4 months 1 week ago #57027 by Jack R
Busymom123

While you describe a strange set of circumstances that cannot provide any sort of conclusion, one possible answer to your question comes to mind.

Cytology - examining urine for cancer cells is not specific to the bladder. Cancer cells from the ureters and renal pelvis (kidneys), if any cancer IS there, will also be found. Upper urinary tract cancer can produce a properly positive finding of cancer by cytology, yet there may be NO cancer in the bladder (at least) at the present time.

It may well be time for a fresh opinion from a trusted provider with no prior baggage. Try a university medical school, or consider any of the NIH-NIC Designated Cancer Centers. link to the list is below.

https://www.cancer.gov/research/nci-role/cancer-centers/find

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis
The following user(s) said Thank You: Busymom123

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4 months 1 week ago #57026 by sara.anne
All the report says is that there are abnormal cells present that "look like" high grade cancer cells. I recently read that up to 12% of such reports are "false positives." Only a biopsy, such as was done during the TURB, can definitively diagnose cancer.

But to put your minds at ease, and since you and your dad have an uncomfortable relationship with his current urologist, my personal suggestion would be a consultation with a new, highly qualified urologist.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 months 1 week ago - 4 months 1 week ago #57025 by Busymom123
Thank you for the reply.

Is this true of cytology even if the result is very specific?? I’ve attached part of the report
Attachments:

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4 months 1 week ago #57024 by sara.anne
So sorry to hear the mish-mash that your father and your family have been going through. First, a word about cell cytology tests. They are notorious for being "overly sensitive." That means that they sometimes give a result that indicates cancer when there is none. Because of this, they are not used for a primary diagnosis....just as a suggestion that additional tests should be made before a diagnosis can be certain. Cells can be abnormal for lots of reasons other than cancer....a mild infection, for example. The urologist did the right thing in doing a TURB to rule cancer in or out. Fortunately, in this case, he ruled it out.

However, since your father has had a bad experience in communication with this urologist, this might be a good time to find another urologist for a second opinion on the situation. This would give him a good opportunity to "audition" a new urologist that he might be more comfortable with.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 months 1 week ago #57023 by Busymom123
Hello. I am new here. My dad has just gone through a pretty bad experience. He had high grade bladder cancer 15 years ago and was treated. In November he started having blood in his urine so he went back to the urologist that treated him.

The doc did a wash that showed high grade once again. This doctor never called and informed my mother and father. They found out when the cytology report showed in the patient online chart for our hospital system. The report was positive in just over 24 hours and yet even with call after call this urologist never called my dad for 12 days and when he did he did not move up his already scheduled surgery (they thought would be a TURP).

Today before his surgery this doc comes to the pre-op area and tells my dad and the rest of the family he had cancer 4 years ago and that my father was told this and my father never followed up. This could not be further from the truth.

I could go on and on. Nightmare.

My question is after today’s surgery he comes out and says that my father did not have cancer 4 years ago after all. He also tells us that even though the cytology positively showed high grade recurrent cancer my father does NOT in fact have cancer now because there was no tumor found in today’s surgery.

This is a total terrifying nightmare for all of us.

Is this possible? That the wash showed cancer cells but he does not have cancer??

Please help us know what the best thing to do next is.

Thank you

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