Review

 

Hereditary renal cancer

 

Julián Sanz-Ortega, Carlos Olivier*, Pedro Pérez Segura**, Isabel Galante Romo*, Luis San José Mansó*, Mamen Saez

 

Servicio de Anatomía Patológica, *Urología  y **Oncología. Hospital Clínico San Carlos. Madrid, Spain

Unidad Clínica del Cáncer Renal Hereditario (UCCRH) (Integrado en la Comisión multidisciplinar de Consejo Genético Hospital Clínico San Carlos). Spain

 

ACTAS UROLÓGICAS ESPAÑOLAS 2009;33(2):127-133

 

Abstract

Renal cancer is the tenth leading cause of death from cancer. There are an increasing number of genes known to be associated with an increased risk for specific types of renal cancer.

People with von Hippel‑Lindau (VHL) syndrome have approximately a 40% risk of developing multiple bilateral clear cell renal cancer. They can also develop retinal and brain hemangioblastoma, renal or pancreatic cysts, pheochromocytoma, and endolymphatic sac tumors. Four VHL phenotypes with different risks of renal cancer and pheochromocytoma have been reported depending on germline mutation.

Hereditary papillary renal cell carcinoma syndrome has papillary type 1 renal cell carcinomas associated with proto‑oncogene c‑MET germline mutations.

The Birt‑Hogg‑Dubé syndrome has FLCN gene mutations associated with fibrofolliculomas, lung cysts with a high risk for spontaneous pneumothorax, and a 15% to 30% risk of renal cancers (most classified as chromophobe carcinoma, oncocytoma or oncocytic hybrid tumor, but clear cell and papillary renal cancers have also been reported). Histopathological findings such as oncocytosis and oncocytic hybrids are very unusual outside the syndrome.

Hereditary leiomyomatosis and renal cell cancer syndrome show mutations in the fumarate hydratase gene and cutaneous leiomyomata in 76% of affected patients, uterine leiomyomata in 100% of females, and unilateral, solitary, and aggressive papillary renal cancer in 10% to 16% of patients. Prominent eosinophilic nucleoli with a perinucleolar halo are specific histopathological changes.

Tuberous sclerosis complex is one of the most prevalent (1/5.800) hereditary syndromes where renal disease is the second leading cause of death, associated to angiomyolipomas (70%), renal cysts, oncocytomas, or clear cell renal carcinoma.

Keywords: renal cancer; Von‑Hippel‑Lindau; germline mutations; HLRCC; leiomyomas

 

Renal cancer is the seventh and ninth most common cancer in males and females respectively, and the tenth leading cause of death from cancer overall. It is estimated that 54,390 new cases of renal cancer (33,130 males and 21,260 females) will be diagnosed in 2008 in the United States, with an estimated 13,010 deaths (8,100 males and 4,910 females)1. In Spain, according to the national statistics institute, 2,000 deaths/year are estimated. Some of these deaths could be prevented with a better management of people at an increased risk of renal cancer due to genetic predisposition.

Renal cancer is not a single disease, but encompasses different conditions with different biological behavior, morphology, and molecular basis. There are an increasing number of genes which are associated to an increased risk of renal cancer. Some of these hereditary syndromes have been reported very recently and renal prevalence is not known with certainty, but at least 5% of renal carcinomas are thought to have a hereditary basis. Identification of a genetic syndrome in a family may help develop a cancer screening plan and, in some cases, establish a better treatment.

This review analyzes the characteristics of the most common hereditary syndromes, usually associated to a specific histological subtype, tumor frequency, the available genetic tests, and the recommended screening/early detection programs and treatments.

Familial syndromes associated to different types of renal cancer include:

• Von Hippel‑Lindau (VHL): Bilateral and multifocal clear cell renal carcinoma. Patients with VHL syndrome are also at risk for CNS hemangioblastoma, retinal angioma, pheochromocytoma, and endolymphatic sac tumors.

• Hereditary papillary renal cancer (HPRC): Bilateral, multifocal papillary type 1 carcinoma.

• Hereditary leiomyomatosis and renal cell cancer (HLRCC): Solitary renal tumors such as papillary type 2 carcinoma. Patients with HLRCC may experience multiple cutaneous and/or uterine leiomyomas of an early and aggressive onset.

• Birt‑Hogg‑Dubé: Renal tumors are usually multifocal and bilateral. They include oncocytoma, chromophobe carcinoma, oncocytic hybrid tumor, and clear cell renal carcinoma in a minority. The syndrome is associated to skin fibrofolliculomas.

• Tuberous sclerosis: This is associated to angiomyolipoma.

In these syndromes, the mutation inherited should be present in the germline and thus in all cells. Testing of peripheral blood is recommended because of its greater specificity, simplicity, and rapidity. Paraffin‑embedded or frozen archived material from tumors and normal tissue may also be tested.

This reviews details the adequate clinical and/or histopathological criteria for deciding in each syndrome whether a patient is amenable to genetic testing. Thus, a hereditary syndrome may be suspected by pathologists, urologists, dermatologists, or other specialists, sometimes in concert. Patients must be examined and informed of the consequences and scope of the study by the genetic counseling team. If patients cannot be seen in person and want to send a sample for genetic testing, the first “indispensable” requirement is to obtain their informed consent (biomedical research act 14/2007, July 3, 2007). The next step is DNA extraction from blood (or frozen or paraffin‑embedded tissue, when applicable) and molecular analysis, as described below.

 

HEREDITARY SYNDROMES

Von hippel‑lindau (VHL) syndrome

Characteristics: People with VHL have a greater risk of several types of tumors(2-10). Most these tumors are benign in nature. However, patients with VHL have a 40% risk for developing renal cancer, which is main cause of death. The specific type of renal cancer related to VHL is clear cell renal carcinoma. Other parts of the body where tumors may develop include the eye (angioma5,6), brain7 and spinal cord (hemangioblastoma), adrenal glands (pheochromocytoma), and ears (endolymphatic sac tumor8). Patients with VHL may also develop cysts in their kidney or pancreas. VHL symptoms usually develop at 20 and 30 years, but may occur in childhood. Approximately 20% of patients with VHL have no family history of the disease.

 

Diagnosis: Clinical diagnosis of von Hippel‑Lindau syndrome is made in2:

• A person who does not report or know a family history but has two or more characteristic lesions, e.g. two or more hemangioblastomas of the retina or cerebellum or a single hemangioblastoma associated to a visceral manifestation such as renal or pancreatic cysts, renal cell carcinoma before the age of 60, pheochromocytoma and, less commonly, endolymphatic sac tumor, papillary cystadenoma of epididymis or broad ligament, or neuroendocrine tumors of the pancreas9.

• A person with a family history of VHL syndrome with only one of the previous manifestations.

 

Pathological suspicion: In addition to the above characteristics, the pathologist may suspect the syndrome in the event of synchronic or metachronic occurrence of the following:

• Spectrum of bilateral lesions: Clear cell renal carcinoma (CCRC) and renal cysts.

• Cystic precursor lesions and early forms of CCRC.

 

Gene: VHL is the only gene associated to VHL (chromosome 3p25‑p26). Inheritance is autosomal dominant. VHL acts as a tumor‑suppressing gene and is an essential component of a protein complex that is bound to and degrades protein HIF‑1 (hypoxia‑inducible factor). When VHL function is lost, HIF‑1 remains abnormally active, acting as a stimulus of carcinogenetic molecular pathways that activate cell proliferation.

 

Molecular genetic testing10-12: Diagnosis of VHL syndrome is suspected in subjects with the characteristic lesions. Molecular genetic testing of the VHL gene detects mutations in almost 100% of subjects affected.

 

Clinical methods11,12:

• Confirmatory diagnostic tests

• Prediction tests

• Prenatal diagnosis

• Preimplantation genetic diagnosis

 

• Sequence analysis. Analysis of sequences of the three exons to detect point mutations (~ 72% of VHL mutations).

• Various methods (e.g. semiquantitative PCR) may be used for detecting partial or complete loss of the chromosome region of the gene, accounting for approximately 28% of all VHL mutations12.

• For people with signs of VHL who do not strictly meet diagnostic criteria and do not have a detectable VHL germline mutation, de novo somatic mutations should be considered13. In some cases, molecular genetic testing in the offspring of these subjects demonstrates the VHL mutation.

 

Genotype‑phenotype correlations14-16:

Four classical VHL phenotypes have been reported based on the risk of pheochromocytoma or renal cell carcinoma.

VHL type 1 is characterized by a low risk of pheochromocytoma and missense mutations disturbing protein folding.

VHL type 2 is characterized by a high risk of pheochromocytoma and other missense mutations. VHL type 2 is in turn subdivided into:

• Type 2A: low risk of renal cell carcinoma,

• Type 2B: high risk of renal carcinoma, and

• Type 2C: with risk of pheochromocytoma.

 

Management17. Conservative renal surgery for successive multiple lesions (partial nephrectomy when possible) of clear cell renal carcinoma; kidney transplant after bilateral nephrectomy; excise pheochromocytomas. Prevention of secondary deficits such as hearing loss, vision loss, and neurological symptoms. Monitoring: annual ophthalmological examination, starting before five years of age; annual blood pressure monitoring and measurement of catecholamines in urine from the age of five years in families with a high incidence of pheochromocytoma; annual abdominal ultrasound starting at 16 years of age, followed by evaluation of suspicious lesion with CT or MRI.

Tests in relatives at risk: Clarify the genetic status of family members to avoid the need for high monitoring costs in those who have not inherited the mutation.

 

Penetrance: Almost all subjects having a mutation in the VHL gene will experience symptoms related to the disease before 65 years of age.

 

Prevalence: VHL incidence is approximately one out of every 36,000 births18.

 

Hereditary papillary renal cell carcinoma (HPRCC)

HPRCC is suspected when two or more close relatives have been diagnosed of type 1 papillary renal carcinoma. Patients with HPRCC may develop multiple renal tumors in one or both kidneys. Patients from families in which the HPRCC mutation is identified should undergo annual screening by ultrasound, MRI and/or computed tomography from approximately 30 years of age.

The HPRCC‑associated gene is called c‑met (located in chromosome 7q31). It is a proto‑oncogene, and therefore produces proteins promoting normal cell growth. Type 1 papillary carcinoma is also characterized, both in its familial and sporadic forms, by trisomy in chromosomes 7, 16, or 17, and in males by loss of chromosome Y19.

The inheritance pattern is consistent with autosomal dominant transmission with low penetrance.

 

Birt‑hogg‑dubé (BHD) syndrome

Summary: The BHD syndrome is a rare condition described in 199720 associated to fibrofolliculomas (benign tumors of hair follicles, usually white or flesh‑colored), lung cysts, and an increased risk of renal cancer. Patients with BHD have a 15%‑30% risk of developing renal cancer. Most renal cancers associated to BHD are classified as chromophobe carcinomas and oncocytomas, but clear cell renal and papillary carcinomas may also occur. Because of the greater risk of renal cancer, annual screening with ultrasound, MRI, and CT should be considered from 25 years of age.

 

Clinical characteristics20-25. These include skin manifestations (fibrofolliculomas, trichodiscomas, and acrocordons), lung cysts and history of pneumothorax, and various types of renal tumors. Disease severity may vary substantially. Skin lesions usually occur during the third or fourth decades of life and increase in size and number with age. Most lung cysts are bilateral, multifocal, and asymptomatic, but involve a high risk of spontaneous pneumothorax. Approximately 15% of patients with BHD syndrome develop renal tumors, which are bilateral and multifocal and usually grow slowly; mean age at tumor diagnosis is 48 years. Most common tumors include oncocytoma, chromophobe carcinoma, or a hybrid of both types of tumor.

 

Clinical diagnosis:

• Multiple small cutaneous manifestations as papules distributed over the face, neck, and upper trunk. The characteristic triad consists of fibrofolliculomas (multiple hamartomas of hair follicles), trichodiscomas, and acrocordons, but only fibrofolliculomas are specific for the BHD syndrome. Dermatological diagnosis of the Birt‑Hogg‑Dubé syndrome is made in subjects who have five or more papulas with at least one histologically documented fibrofolliculoma25.

Note: A scrape biopsy is usually not sufficient.

• Lung cysts and spontaneous pneumothorax. Most patients (89%) with BHD syndrome have multiple bilateral lung cysts, identified by CT of the chest. The total number of cysts per individual lung ranges from 0 and 166 (mean 16). Twenty‑four percent (48/198) of patients with BHD syndrome had a history of one or more episodes of pneumothorax25.

• Renal tumors. Renal tumors are usually multifocal and bilateral. They include in combination: oncocytoma, chromophobe carcinoma, oncocytic hybrid tumor, and clear cell renal carcinoma in a minority.

*Note: The original description and diagnosis of the Birt‑Hogg‑Dubé syndrome is based on skin pathology. However, recent research has shown that some subjects with Birt‑Hogg‑Dubé syndrome could have a pulmonary syndrome and/or renal tumors without skin lesions.

• Pathological suspicion: When a combination of chromophobe carcinomas and oncocytomas exists, particularly in the presence of early "oncocytosis" lesions or oncocytic hybrids that are uncommon outside the hereditary syndrome.

 

Diagnosis/testing26-27. FLCN (BHD) is the only gene associated to the Birt‑Hogg‑Dubé syndrome. FLCN gene mutations are detected in 84% of affected individuals.

 

Genetic counseling. Inheritance is autosomal dominant.

 

Molecular genetic testing:

• Sequence analysis. An insertion or deletion in exon 11 (mutational hotspot) was found in 53% (27 of 51) of families with Birt‑Hogg‑Dubé syndrome28.

Analysis of sequencing of all exons (exon 4-14) increases mutation detection to 84%.

Genotype‑phenotype correlations: Patients who have a deletion in exon 11 may have a lower risk of renal cancer than those with other mutations28.

Penetrance: Based on the three major clinical manifestations, penetrance of the Birt‑Hogg‑Dubé syndrome is considered very high.

Prevalence: More than 60 families affected have been reported29.

 

Hereditary leiomyomatosis and renal cell carcinoma (HLRCC)

Summary30-35: HLRCC is a syndrome described in 2001 whose renal incidence is unknown30. Seventy‑six percent of patients with HLRCC will develop cutaneous nodules called leiomyomas. Nodules mainly occur in the arms, legs, chest, and back. Women with HLRCC develop uterine leiomyoma (100%) or, less commonly, leiomyosarcoma. Patients with HLRCC also have a 20% risk of developing type 2 papillary renal carcinoma. Women in these families should also undergo gynecological tests because uterine leiomyomas are usually asymptomatic and lead to early hysterectomy (mean age, 30 years). The gene associated to HLRCC is called FH (fumarate hydratase).

 

Clinical diagnosis35: No consensus exists on the diagnostic criteria for HLRCC. The clinical condition may be suspected, amongst others, by dermatologists, urologists, and pathologists based on the following:

• Multiple cutaneous leiomyomas with at least one histologically documented leiomyoma.

• A single leiomyoma in the presence of a positive family history of HLRCC.

• One of more type 2 papillary renal carcinomas with or without a family history of HLRCC.

• Typical histopathological features in type 2 papillary renal carcinomas and/or uterine leiomyomas: presence of eosinophilic macronuclei surrounded by a clear halo.

Note: Because of the high prevalence of uterine leiomyoma in the general population, a solitary uterine leiomyoma is not sufficient for HLRCC diagnosis.

 

Genetic testing strategy31-32: Inheritance of HLRCC is autosomal dominant. Genetic tests are intended to detect a germline mutation in the FH gene, usually by direct sequencing of all exons.

Measurement of fumarate hydratase activity may be of help for diagnosing HLRCC in cases with atypical presentation and undetectable FH mutations.

 

Genotype‑phenotype correlations: No genotype‑phenotype correlations have been reported. Mutations associated to HLRCC are distributed along the FH gene.

 

Penetrance: Based on three major clinical manifestations, HLRCC penetrance is considered to be very high.

Prevalence: The syndrome has recently been described and its prevalence is unknown. More the 100 families with HLRCC have been reported.

 

Tuberous sclerosis

Characteristics36,37: Tuberous sclerosis (TE) involves changes in skin (hypopigmented maculas, facial angiofibroma, facial fibrous plaque, ungueal fibroma) and brain (cortical plaques, subependymal nodules, seizures, mental retardation or delayed development), kidney (angiomyolipoma, cysts), and heart (rhabdomyoma, arrhythmia). CNS tumors are the main causes of morbidity and mortality, while kidney disease is the second leading cause of premature death.

Kidney. Kidney disease is the second leading cause of premature death (27.5%) in patients with tuberous sclerosis38. It is estimated that 80% of children with tuberous sclerosis have an identifiable renal lesion at a mean age of 10.5 years. Five different renal lesions occur in TE: benign angiomyolipoma (70% of affected individuals), epithelial cysts (20%-30%), oncocytoma (benign adenomatous hamartoma) (1%), malignant angiomyolipoma (<1%), and renal cell carcinoma (<3%).

 

Diagnosis/testing. TE diagnosis is based on clinical findings. Two causative genes have been identified, TSC1 and TSC238-39.

 

Clinical diagnosis: Diagnostic criteria for tuberous sclerosis (TE) have been reviewed40.

Genetic counseling38-39. TE inheritance is autosomal dominant. Two thirds of affected patients have TE as the result of a de novo genetic mutation. Twenty‑seven percent of mutations occur in TSC1, and 73% in TSC2.

 

Molecular genetic testing:

• Sequence analysis. TSC1 mutations are mainly small insertion and deletions and nonsense mutations. By contrast, TSC2 mutations may also include a significant number of major rearrangements and deletions that may not be detected by sequence analysis.

Molecular genetic testing of TSC1 and TSC2 is complex because of the big size of both genes, the high number of diseases causing mutations, and the high rate of somatic mosaicism (10%-25%).

• Genomics‑microarray analysis/FISH: (SignatureChipTM) includes evaluation of 125 clinically relevant loci using 589 BAC clones for detecting whether or not the DNA region tested is present.

No identifiable mutation is found in 20%-30% of patients with tuberous sclerosis, that may therefore not be considered as a genetic subtype.

 

Genotype‑phenotype correlations: TSC1 mutations usually appear to cause a less severe phenotype than TSC2 mutations.

• Al‑Saleem et al (1998)37 reported a greater risk of renal neoplasm in patients with TSC2 mutations.

 

Penetrance: TSC penetrance appears to be 100%.

 

Prevalence: TSC incidence may be as high as one in every 580036.

 

REFERENCES

1. Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR, Clegg L, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2005, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission, posted to the SEER web site, 2008.

2. Linehan WM, Zbar B, Klausner DR. Renal carcinoma. In: Scriver CR, Beaudet AL, Sly WS, Valle D, Vogelstein B (eds) The Metabolic and Molecular Bases of Inherited Disease (OMMBID), McGraw-Hill, New York, Chap 41,2002.

3. Molino D, Sepe J, Anastasio P, De Santo NG. The history of von Hippel-Lindau disease. J Nephrol 19 Suppl. 2006;10:S119-23. [PubMed]

4. Glasker S. Central nervous system manifestations in VHL: genetics, pathology and clinical phenotypic features. Fam Cancer. 2005;4(1):37-42. [PubMed]

5. Kreusel KM. Ophthalmological manifestations in VHL and NF 1: pathological and diagnostic implications. Fam Cancer. 2005;4(1):43-47. [PubMed]

6. Webster AR, Maher ER, Moore AT. Clinical characteristics of ocular angiomatosis in von Hippel-Lindau disease and correlation with germline mutation. Arch Ophthalmol. 1999;117(3):371-378. [PubMed]

7. Iliopoulos O. von Hippel-Lindau disease: genetic and clinical observations. Front Horm Res. 2001;28:131-166. [PubMed]

8. Giannini C, Scheithauer BW, Davis DH. Peripheral nerve hemangioblastoma. Mod Pathol. 1998;11(10):999-1004. [PubMed]

9. Choo D, Shotland L, Mastroianni M, Linehan WM, Oldfield EH. Endolymphatic sac tumors in von Hippel-Lindau disease. J Neurosurg. 2004;100(3):480-487. [PubMed]

10. Marcos HB, Libutti SK, Alexander HR, Lubensky IA, Bartlett DL, Walther MM, Linehan WM, Glenn GM, Choyke PL. Neuroendocrine tumors of the pancreas in von Hippel-Lindau disease: spectrum of appearances at CT and MR imaging with histopathologic comparison. Radiology. 2002;225(3):751-758. [PubMed]

11. Beroud C, Joly D, Gallou C, Staroz F, Orfanelli MT, Junien C. Software and database for the analysis of mutations in the VHL gene. Nucleic Acids Res. 1998; 26(1):256-258. [PubMed]

12. Rasmussen  A, Nava-Salazar S, Yescas P, Alonso E, Revuelta R, Ortiz I, Canizales-Quinteros S, Tusié-Luna MT, López-López M: Von Hippel-Lindau disease germline mutations in Mexican patients with cerebellar hemangioblastoma. J Neurosurg 2006 Mar;104(3):389-394. [PubMed]

13. American Society of Clinical Oncology. ASCO policy statement update: genetic testing for cancer susceptibility. J Clin Oncol. 2003;21:2397-2406.

14. Sgambati MT, Stolle C, Zbar B, Linehan WM, Glenn GM. Mosaicism in von Hippel-Lindau disease: lessons from kindreds with germline mutations identified in offspring with mosaic parents. Am J Hum Genet. 2000;66(1):84-91. [PubMed]

15. Zbar B, Kishida Tet al. Germline mutations in the (VHL) gene in families from North America, Europe, and Japan. Hum Mutat. 1996;8(4):348-357. [PubMed]

16. Stebbins CE, Pavletich NP. Structure of the VHL-ElonginC-ElonginB complex: implications for VHL tumor suppressor function. Science. 1999;284(5413):455-461. [PubMed]

17. Maher ER, Greenstein RM. The von Hippel-Lindau germline mutation V84L manifests as early-onset bilateral pheochromocytoma. Am J Med Genet A. 2006;140(7):685-690.[PubMed]

18. Grubb RL III, Choyke PL, Linehan WM, Walther MM. Management of von Hippel-Lindau-associated kidney cancer. Nat Clin Pract Urol. 2005;2(5):248-255. [PubMed]

19. Kovacs G: Molecular cytogenetics of renal cell tumour. Adv Cancer res 1993;62:89-124. [PubMed]

20. Birt AR, Hogg GR, Dube WJ. Hereditary multiple fibrofolliculomas with trichodiscomas and acrochordons. Arch Dermatol. 1997;113(12):1674-1677. [PubMed]

21. Painter JN, Tapanainen H, Somer M, Tukiainen P, Aittomäki K. Birt-Hogg-Dube gene (FLCN) causes dominantly inherited spontaneous pneumothorax. Am J Hum Genet. 2005;76:522-527. [PubMed]

22. American Society of Clinical Oncology. ASCO policy statement update: genetic testing for cancer susceptibility. J Clin Oncol. 2003;21:2397-2406.[PubMed].

23. Linehan WM, Zbar B, Walther MM. The genetic basis of cancer of kidney cancer: implications for gene-specific clinical management. BJU Int 95 Suppl. 2005;2:2-7. [PubMed]

24. Da Silva NF, Gentle D, Maher ER. Analysis of the Birt-Hogg-Dube (BHD) tumour suppressor gene in sporadic renal cell carcinoma and colorectal cancer. J Med Genet. 2003;40(11):820-824. [PubMed]

25. Toro JR, Glenn G, Duray P, Linehan M, Turner ML. Birt-Hogg-Dube syndrome: a novel marker of kidney neoplasia. Arch Dermatol. 1999;135(10):1195-1202. [PubMed]

26. Nickerson ML, Toro JR, Merino M, Linehan WM, Zbar B, Schmidt LS. Mutations in a novel gene lead to kidney tumors, lung wall defects, and benign tumors of the hair follicle in patients with the Birt-Hogg-Dube syndrome. Cancer Cell. 2002;2(11):157-164. [PubMed]

27. Vocke CD, Yang Y, Pavlovich CP, Schmidt LS, Nickerson ML, Torres CA, Merino MJ, Zbar B, Linehan WM. High frequency of somatic frameshift BHD gene mutations in Birt-Hogg-Dube-associated renal tumors. J Natl Cancer Inst. 2005;97(12):931-935. [PubMed]

28. Schmidt LS, Toro JR, Merino MJ, Turner ML, Zbar B, Linehan WM. Germline BHD-mutation spectrum and phenotype analysis of a large cohort of families with Birt-Hogg-Dube syndrome. Am J Hum Genet. 2005;76(6):1023-1033. [PubMed]

29. Pavlovich CP, Grubb RL III, Linehan WM. Evaluation and management of renal tumors in the Birt-Hogg-Dube syndrome. J Urol. 2005;173(5):1482-1486. [PubMed]

30. Launonen V, Vierimaa O, Kiuru M, Isola J, Roth S, Pukkala E, Sistonen P, Herva R, Aaltonen LA. Inherited susceptibility to uterine leiomyomas and renal cell cancer. Proc Natl Acad Sci U S A. 2001;98(6):3387-3392. [PubMed]

31. Alam NA, Tomlinson IP. Clinical features of multiple cutaneous and uterine leiomyomatosis: an underdiagnosed tumor syndrome. Arch Dermatol. 2005;141(2): 199-206. [PubMed]

32. Alam NA, Rowan AJ, Wortham NC, Pollard PJ, Tomlinson IP. Genetic and functional analyses of FH mutations in multiple cutaneous and uterine leiomyomatosis, hereditary leiomyomatosis and renal cancer, and fumarate hydratase deficiency. Hum Mol Genet. 2003;12(11):1241-1252. [PubMed]

33. Kiuru M, Lehtonen R, Arola J, Salovaara R, Jarvinen H, Aittomaki K, Sjoberg J, Visakorpi T, Knuutila S, Aaltonen LA. Few FH mutations in sporadic counterparts of tumor types observed in hereditary leiomyomatosis and renal cell cancer families. Cancer Res. 2002;62(16): 4554-4557. [PubMed]

34. Toro JR, Nickerson ML, Linehan WM, Schmidt LS, Zbar B. Mutations in the fumarate hydratase gene cause hereditary leiomyomatosis and renal cell cancer in families in North America. Am J Hum Genet. 2003;73(1):95-106. [PubMed]

35. Grubb RL 3rd, Franks ME, Toro J; et al: Hereditary leiomyomatosis and renal cell cancer: a syndrome associated with an aggressive form of inherited renal cancer. J Urol. 2007;177(6):2074-2079.[PubMed]

36. Osborne JP, Fryer A, Webb D. Epidemiology of tuberous sclerosis. Ann N Y Acad Sci. 1991;615:125-127. [PubMed]

37. Al-Saleem T, Wessner LL, Henske EP. Malignant tumors of the kidney, brain and soft tissues in children and young adults with the TSC. Cancer 1998;83(10):2208-2216. [PubMed]

38. Shepherd CW, Gomez MR, Lie JT, Crowson CS. Causes of death in patients with tuberous sclerosis. Mayo Clin Proc. 1991;66(8):792-796. [PubMed]

39. European Chromosome 16 Tuberous Sclerosis Consortium.Identification of the tuberous sclerosis gene on chromosome 16. Cell. 1993;75:1305-1315.

40. Roach ES, Sparagana SP. Diagnosis of tuberous sclerosis complex. J Child Neurol. 2004;19(7):643-649. [PubMed]

41. Au KS, Williams AT, Gambello MJ, Northrup H. Molecular genetic basis of tuberous sclerosis complex: from bench to bedside. J Child Neurol. 2004;19(9):699-709. [PubMed]

42. Oesterling JE, Fishman EK, Goldman SM, Marshall FF. The management of renal angiomyolipoma. J Urol. 1986;135(6):1121-1124. [PubMed]

43. Pea M, Bonetti F, Martignoni G, Apparent renal cell carcinomas in tuberous sclerosis are heterogeneous: the identification of malignant epithelioid angiomyolipoma. Am J Surg Pathol. 1998;22(2):180-187. [PubMed]

44. Jones AC, Shyamsundar MM, Cheadle JP. Comprehensive mutation analysis of TSC1 and TSC2-and phenotypic correlations in 150 families with tuberous sclerosis. Am J Hum Genet. 1999;64(5):1305-1315. [PubMed]

45. Sancak O, Nellist M, Mutational analysis of the TSC1 and TSC2 genes in a diagnostic setting: genotype-phenotype correlations and comparison of diagnostic DNA techniques in Tuberous Sclerosis Complex. Eur J Hum Genet. 2005;13(6):731-741. [PubMed]

Correspondence author: Dr. Julián Sanz-Ortega

Servicio de Oncología Médica

Hospital Clínico San Carlos

Prof. Martín Lagos, s/n - 28040 Madrid

Tel.: 913 303 822

Author email: jsanzo.hcsc@salud.madrid.org

Paper information: Review – Renal cancer

Manuscript received: october 2008

Manuscript accepted: november 2008