2nd cytology saying "Negative for HGUC" but raising a problem of LGUN

1 month 2 weeks ago #62148 by niconice
Thank you very much for spending a lot of time for your precious message especially when you say that it is "not life-threatening". As you understood, I'm left alone for months with those results and creating lots of weird stories in my head without understanding exactly what is going on in my body. As I said, I do have symptoms like nocturia (3 to 5 times a night) and diuria (pollakiuria altogether). Comparing with the list of all the features of a LGUN lab diagnosis that you wrote and my results, I can read on it :
- superficial, intermediate and deep urothelial cells often without significant cytonuclear atypia,
- numerous isolated, independent and uniform urothelial cells,
- presence of three-dimensional clusters of urothelial cells with overlapping nuclei or presenting fibrovascular axes (I think in correct English it is "presenting fibrovascular cores" I don't know this technical translation but maybe you understand it),
- absence of cytological criteria in favor of a high grade carcinoma but increase in the nucleocytoplasmic ratio and irregularity of the nuclear membrane.

Hope these details help you understand better why the lab pathologist reported the LGUN on my results.

Thank you again for the time spent for me. I'm actually doing all these checks at the Hospital of Monaco (South of France). I hope as well that it can help people understand better their results if they do receive the same-kind of lab report following their urine cytology.

Regards.

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1 month 3 weeks ago #62145 by joea73
"Negative for HGUC" is the expression used in the new cytology reporting system - The Paris Reporting System for Reporting Cytology (TPS), incorporated around 2015, now 2022  version is TPS 2.0.   TPS was developed by American Society of Cytopathologist and International Congress of Cytopathologist.  Most cytology lab should have adopted the TPS guidelines.   So, the cytology lab who analyzed your urine sample seems to be following the TPO guidelines.

The major shift in its goal is to improve the accuracy by reducing number of Atypical, and in reporting for HGUC only. The rationale for reporting HGUC only is because HGUC can be life threatening if not identified accurately and LGUC is considered non life threatening.  Also, gnomically LGUC and HGUC are considered  different cancers such that high percentage of LGUC has mutation in FGFR, whereas HGUC shows mutations similar found  in muscle invasive bladder cancer.

In term of LGUN or LG  Urothelial Neoplasm, I get confused with possible difference between neoplasm and carcinoma, or neoplasm and neoplasia as I have read that they are sometimes used interchangeably though there may be fine differences which I do not know.

In terms of Low Grade urothelial neoplasia,  Dr. Adebowale Adeniran, Professor of Pathology and Director of Cytopathology and Cytology Lab at Yale School of Medicine mentioned as follows in his 2020 webinar on TPS. 

Low-Grade urothelial neoplasia
Combined cytologic term for low grade papillary urothelial neoplasms which include
 Urothelial papilloma, PUNLMP, LGPUC, flat low grade intraurothelial neoplasia
3-dimentional cellular papillary clusters with fibrovascular cores with capillaries
 
Features
Almost impossible to diagnose without mini-biopsy with fibrovascular core
Cytologically normal nuclei
Is it truly a carcinoma?
More common than HGUC
But NOT life threatening

The thing is that the urologist could not find anything in cystoscopy, CT scan did not find anything.  So, the urologist would not know where to get mini biopsy from unless the urologists' gets it from random locations in bladder.   




 
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1 month 3 weeks ago - 1 month 3 weeks ago #62142 by niconice
Hello, I hope everybody is doing well and safe.

Following hematuria in 2022 (macro) just for one day, I had a CT scan (sept 2022) but it didn't show anything. March 2023, cystoscopy didn't show anything and the urologist collected urine into the bladder during the cystoscopy to be sent for cytology purpose. The result came out 2 weeks later with "Negative for high grade urothelial carcinoma but raising a problem of a low grade urothelial neoplasm".
CT scan was done again and another cytology too but it was a normal 3-day-cytology in small plastic container (March 2023), scan didn't show anything and the cytology was just negative without the comment of LGUN.

The urologist told me to come back for a normal check end of 2023.
December 2023, Cystoscopy didn't show anything and urine was collected during the endoscopy and sent to the pathologist lab.
Results obtained in January 2024, "Negative for high grade urothelial carcinoma but raising a problem of a low grade urothelial neoplasm" again almost one year later. Feb 2024, Ct scan was performed and doesn't show anything.

It is really frustrating to receive these results and be left by my urologist saying me that these results show cancer and that it is slow but nothing has been found even one year later at the URO CT scan nor at the URO MRI. I wake up everyday and night wondering if I really have cancer or not. My symptoms are nocturia and diuria. Taking for 2 weeks now fesoterodine 8mg/day to reduce symptoms.

Thank you for your advice and experience.

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