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Desmoid Tumor

Alternative diagnostic terms
Desmoid Fibromatosis
Aggressive Fibromatosis

Common anatomical locations
Extremities = 30-40% of cases, abdominal wall = 20%, retroperitoneum/abdominal cavity = 15%, and chest wall = 10-15%.

Pathology comment
Locally aggressive, but non-metastasizing deep-seated myo-fibroblastic neoplasm with infiltrative growth and a very high incidence of local recurrence.

Familial adenomatous polyposis (FAP) is a hereditary condition associated with mutations in the APC gene and leading to a predisposition for developing Desmoid tumors in addition to the development of numerous colonic polyps and a risk of colorectal cancer. Desmoid tumors (DTs) are a significant extraintestinal manifestation of FAP that occurs in approximately 10%-30% of individuals with this condition (see Desmoid FAP reference below).

Source
Hornick JL, Fritchie KJ, van de Rijn M, Crago AM. Desmoid fibromatosis. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/login?redirecturl=%2Fchapters%2F33

Desmoid Tumors in Familial Adenomatous Polyposis (FAP):  

Yen T, Stanich PP, Axell L, et al. APC-Associated Polyposis Conditions. 1998 Dec 18 [Updated 2022 May 12]. In: Adam MP, Feldman J, Mirzaa GM, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2024. Available from:  https://www.ncbi.nlm.nih.gov/books/NBK1345/

Maria Laura De Marchis, Francesco Tonelli, Davide Quaresmini, Domenica Lovero, David Della-Morte, Franco Silvestris, Fiorella Guadagni, Raffaele Palimirotta. Anticancer Research Jul 2017, 37 (7) 3357-3366; available from: Reference for Desmoid FAP Syndrome: https://ar.iiarjournals.org/content/37/7/3357.long


For diagnosis or treatment
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Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Diagnostic-specific organizations:
Desmoid Tumor Research Foundation (USA)
Desmóide Brasil | Associação Brasileira do Tumor Desmóide (Brazil)
SOS Desmoide (France)
Desmoid Foundation (France)
SOS Desmoid (Germany)
Desmoid Foundation (Italy)

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Desmoplastic Fibroblastoma

Alternative diagnostic terms
Collagenous Fibroma

Common anatomical locations
Upper arm, shoulder, lower limb, back, forearm, hand, and foot.

Pathology comment
Abundant collagenous or myxocollagenous matrix; low vascularity; scattered, bland, stellate-shaped, and spindled fibroblastic cells. Benign tumors with a significant risk of recurrence but do not usually metastasize.

Source
Hornick JL, Miettinen M, Bridge JA. Desmoplastic Fibroblastoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/login?redirecturl=%2Fchapters%2F33


For diagnosis or treatment
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Patient advocacy
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Clinical trials
SARC Clinical Trials – None
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Adult Fibrosarcoma

Alternative diagnostic terms
None

Common anatomical locations
Deep soft tissues of the extremities, trunk, head, and neck.

Pathology comment
Diagnosis of exclusion

Source
Hornick JL, Yoshida A, Folpe AL. Adult fibrosarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/welcome/


For diagnosis or treatment
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Patient advocacy
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Clinical trials
SARC Clinical Trials – None
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Desmoplastic Small Round Cell Tumor (DSRCT)

Alternative diagnostic terms
Intra-abdominal Desmoplastic Round Cell Tumor
(Also see Highly Aggressive Soft Tissue Tumors of Uncertain Differentiation)

Common anatomical locations
Extremities in two-thirds of cases and more common in the lower rather than upper extremities

Pathology comment
No areas of atypical lipomatous tumor, well-differentiated liposarcoma, or other lines of differentiation present.

Source
Folpe AL, Pedeutour F, Montgomery EA. Pleomorphic liposarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/login?redirecturl=%2Fchapters%2F33


For diagnosis or treatment
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Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
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Dermatofibrosarcoma Protuberans (DFSP)

Alternative diagnostic terms
None

Common anatomical locations
These neoplasms occur most commonly in the trunk, head and neck, proximal extremities, or shoulder girdle and pelvis.

Pathology comment
DFSP has a storiform architecture and uniform spindle cell morphology; diffusely infiltrative growth with a honeycomb pattern in the subcutis; expression of CD34; fibrosarcomatous DFSP: fascicular architecture with increased mitotic activity.

Source
Hornick JL, Mentzel TDW, Pedeutour F. DermatofibroSarcoma protuberans. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2025 Jan 1]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/welcome/


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Inflammatory Myofibroblastic Tumor (IMT)

Alternative diagnostic terms
Solitary Fibrous Tumor (SFT)

Common anatomical locations
IMT shows a wide anatomical distribution, most frequently arising in the abdominal soft tissues (mesentery, omentum, retroperitoneum) and pelvis, followed by the lung, mediastinum, head and neck, gastrointestinal tract, and genitourinary tract (including the bladder and uterus).

Pathology comment
IMT has loose or compact fascicles of spindle cells with a prominent inflammatory infiltrate and a variable fibrous or myxoid stroma; expression of ALK (seen in as many as 60% of cases).

Source
Hornick JL, Yamamoto H. Inflammatory myofibroblastic tumor. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2025 Jan 1]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/welcome/


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Low-Grade Myofibroblastic Sarcoma

Alternative diagnostic terms
Myofibrosarcoma

Common anatomical locations
Low-grade myofibroblastic sarcoma shows a wide anatomical distribution in the extremities, the head and neck region, and especially the tongue and oral cavity.

Pathology comment
Low-grade myofibroblastic sarcomas are characterized by diffusely infiltrative growth between skeletal muscle fibers; contain cellular fascicles of spindle cells with pale eosinophilic cytoplasm; usually demonstrate moderate, focal nuclear atypia and variable expression of SMA (smooth muscle antigen) and/or desmin.

Source
Hornick JL, Mentzel TDW. Low-grade myofibroblastic Sarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2025 Jan 1]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/welcome/


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Superficial CD34-positive Fibroblastic Tumor

Alternative diagnostic terms
PRDM10-Rearranged Soft Tissue Tumor

Common anatomical locations
This tumor most frequently occurs in the thigh/lower extremities, followed by the arm, buttock, and shoulder.

Pathology comment
Characterized by a fascicular or sheet-like proliferation of spindled cells with abundant, eosinophilic, granular to glassy cytoplasm, marked nuclear pleomorphism, a low mitotic count, diffuse CD34 expression, and frequent aberrant keratin immunoreactivity.

Source
Hornick JL, Rekhi B, Folpe AL, Yu L. Superficial CD34-positive fibroblastic tumor. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2025 Jan 1]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from https://tumourclassification.iarc.who.int/welcome/


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
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Clinical trials
SARC Clinical Trials – None
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Myxoinflammatory Fibroblastic Sarcoma

Alternative diagnostic terms
None

Common anatomical locations
Hands and other acral dorsal extremities.

Pathology comment
Characterized by pleomorphic fibroblastic cells with macro-nucleoli in a myxohyaline background with prominent inflammatory cell infiltrate.

Source
Hornick JL, Montgomery EA, Antonescu CR, Folpe AL. Myxoinflammatory Fibroblastic Sarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/welcome/


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
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Infantile FibroSarcoma

Alternative diagnostic terms
Congenital Fibrosarcoma
Cellular Congenital Mesoblastic Nephroma

Common anatomical locations
Superficial and deep soft tissues of the extremities.

Pathology comment
Characterized by an ETV6-NTRK3 fusion.

Source
Hornick JL, Davis JL, Antonescu CR, Bahrami A. Infantile fibroSarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/welcome/


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Myxofibrosarcoma

Alternative diagnostic terms
None

Common anatomical locations
Extremities pelvis and shoulder, more commonly in the lower extremities.

Pathology comment
Comprises a spectrum of malignant fibroblastic neoplasms with variably myxoid stroma, pleomorphism, and a distinctive curvilinear vascular pattern. Prior historical diagnosis included MFH.

Source
Hornick JL, Huang HY, Mentzel TDW, Shibata T. Myxofibrosarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/login?redirecturl=%2Fchapters%2F33.


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Low-Grade Fibromyxoid Sarcoma

Alternative diagnostic terms
None

Common anatomical locations
Proximal extremities and the trunk, usually sub-fascial in depth.

Pathology comment
Consistently have either a FUS-CREB3L2 or FUS-CREB3L1 gene fusion.

Source
Hornick JL, Doyle LA, Mertens F. Low-grade Fibromyxoid Sarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/login?redirecturl=%2Fchapters%2F33.


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Sclerosing Epithelioid Fibrosarcoma

Alternative diagnostic terms
None

Common anatomical locations
Upper or lower extremities, pelvis, shoulder, and girdle.

Pathology comment
A subset of sclerosing epithelioid fibrosarcomas are related morphologically and molecularly to low-grade fibromyxoid sarcoma.

Source
Hornick JL, Doyle LA, Mertens F. Sclerosing epithelioid fibrosarcoma. In: WHO Classification of Tumors Editorial Board. Soft tissue and bone tumors [Internet]. Lyon (France): International Agency for Research on Cancer; 2020 [2024 Dec 29]. (WHO Classification of Tumors Series, 5th ed.; vol. 3). Available from: https://tumourclassification.iarc.who.int/login?redirecturl=%2Fchapters%2F33.


For diagnosis or treatment
Any center listed in the Sarcoma Centers Directory »

Patient advocacy
Any organization with an established program for patient triage, support, and education. See Patient Support Organizations »

Clinical trials
SARC Clinical Trials – None
Find other clinical studies registered on ClinicalTrials.gov


Benign Fibrous Tumors

Alternative diagnostic terms
Tumor-like “Pseudotumor” conditions

Common anatomical locations
None

Pathology comment
Note the plethora of benign alternative diagnoses: Nodular fasciitis, Proliferative fasciitis and proliferative myositis; Myositis ossificans and fibro-osseous pseudotumors of the digits; Ischaemic fasciitis, Elastofibroma (typically involving  the scapula); Fibrous hamartoma of infancy; Fibromatosis colli; Congenital Fibromatosis; Juvenile hyaline fibromatosis; “Inclusion body” fibromatosis; Fibroma of tendon sheath; Myofibroblastoma; Calcifying; aponeurotic fibroma, EWSR1-SMAD3-positive fibroblastic tumor (emerging); Angiomyofibroblastoma; Cellular angiofibroma; Angiofibroma of soft tissue; Nuchal-type fibroma; Acral fibromyxoma; Gardner fibroma; Lipofibromatosis; and Giant cell fibroblastoma.

Source
Pending


For diagnosis or treatment
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Patient advocacy
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Clinical trials
SARC Clinical Trials – None
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