Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removal

Introduction Hereditary leiomyomatosis and renal cell cancer is an autosomal dominant disorder caused by germline mutations in the FH gene and is associated with poor prognosis of aggressive renal cancer. Case presentation A 33‐year‐old man presented with asymptomatic gross hematuria and was diagnos...

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Main Authors: Shodai Suzuki, Yoshiyuki Yamamoto, Taigo Kato, Koji Hatano, Takahiro Matsui, Kae Hashimoto, Takako Miyamura, Yoji Nagashima, Norio Nonomura, Atsunari Kawashima
Format: Article
Language:English
Published: Wiley 2025-03-01
Series:IJU Case Reports
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Online Access:https://doi.org/10.1002/iju5.12820
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author Shodai Suzuki
Yoshiyuki Yamamoto
Taigo Kato
Koji Hatano
Takahiro Matsui
Kae Hashimoto
Takako Miyamura
Yoji Nagashima
Norio Nonomura
Atsunari Kawashima
author_facet Shodai Suzuki
Yoshiyuki Yamamoto
Taigo Kato
Koji Hatano
Takahiro Matsui
Kae Hashimoto
Takako Miyamura
Yoji Nagashima
Norio Nonomura
Atsunari Kawashima
author_sort Shodai Suzuki
collection DOAJ
description Introduction Hereditary leiomyomatosis and renal cell cancer is an autosomal dominant disorder caused by germline mutations in the FH gene and is associated with poor prognosis of aggressive renal cancer. Case presentation A 33‐year‐old man presented with asymptomatic gross hematuria and was diagnosed with a right renal tumor, cT3aN1M0. He underwent open radical nephrectomy, and pathological examination revealed papillary renal cell carcinoma. Despite aggressive treatment, the disease progressed rapidly, and discussions regarding genetic testing could not take place during his lifetime, although circulating‐tumor DNA showed mutation of FH gene. After death, his wife requested postmortem genetic testing. Genetic analysis using DNA extracted from normal kidney tissues in surgical specimens (blood sample absence) confirmed the FH mutation, and hereditary leiomyomatosis and renal cell cancer was diagnosed posthumously. Conclusion This highlights the utility of postmortem genetic testing of surgical specimens to diagnose hereditary leiomyomatosis and renal cell cancer and provide genetic counseling to families, despite limitations during the patient's life.
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spelling doaj-art-d8c3a06d9cfe4fe1ac750f5ff945d0ca2025-08-20T02:00:55ZengWileyIJU Case Reports2577-171X2025-03-018210911310.1002/iju5.12820Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removalShodai Suzuki0Yoshiyuki Yamamoto1Taigo Kato2Koji Hatano3Takahiro Matsui4Kae Hashimoto5Takako Miyamura6Yoji Nagashima7Norio Nonomura8Atsunari Kawashima9Department of Urology Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Urology Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Urology Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Urology Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Pathology Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Genetic Counseling Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Pediatrics Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Surgical Pathology Tokyo Women's Medical University Hospital Tokyo JapanDepartment of Urology Osaka University Graduate School of Medicine Suita Osaka JapanDepartment of Urology Osaka University Graduate School of Medicine Suita Osaka JapanIntroduction Hereditary leiomyomatosis and renal cell cancer is an autosomal dominant disorder caused by germline mutations in the FH gene and is associated with poor prognosis of aggressive renal cancer. Case presentation A 33‐year‐old man presented with asymptomatic gross hematuria and was diagnosed with a right renal tumor, cT3aN1M0. He underwent open radical nephrectomy, and pathological examination revealed papillary renal cell carcinoma. Despite aggressive treatment, the disease progressed rapidly, and discussions regarding genetic testing could not take place during his lifetime, although circulating‐tumor DNA showed mutation of FH gene. After death, his wife requested postmortem genetic testing. Genetic analysis using DNA extracted from normal kidney tissues in surgical specimens (blood sample absence) confirmed the FH mutation, and hereditary leiomyomatosis and renal cell cancer was diagnosed posthumously. Conclusion This highlights the utility of postmortem genetic testing of surgical specimens to diagnose hereditary leiomyomatosis and renal cell cancer and provide genetic counseling to families, despite limitations during the patient's life.https://doi.org/10.1002/iju5.12820cabozantinibcomprehensive genome profilingFHhereditary leiomyomatosis and renal cell cancerrenal cell carcinoma
spellingShingle Shodai Suzuki
Yoshiyuki Yamamoto
Taigo Kato
Koji Hatano
Takahiro Matsui
Kae Hashimoto
Takako Miyamura
Yoji Nagashima
Norio Nonomura
Atsunari Kawashima
Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removal
IJU Case Reports
cabozantinib
comprehensive genome profiling
FH
hereditary leiomyomatosis and renal cell cancer
renal cell carcinoma
title Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removal
title_full Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removal
title_fullStr Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removal
title_full_unstemmed Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removal
title_short Postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome: Identification through normal kidney tissues after surgical removal
title_sort postmortem genetic diagnosis of hereditary leiomyomatosis and renal cell carcinoma syndrome identification through normal kidney tissues after surgical removal
topic cabozantinib
comprehensive genome profiling
FH
hereditary leiomyomatosis and renal cell cancer
renal cell carcinoma
url https://doi.org/10.1002/iju5.12820
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