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Report Produced: 02/13/2026 14:22 PM

Report Question ID Question Discussion Answer Year
20120060 Primary Site/Reportability: What is the primary site and reportability status of a "pancreatic endocrine neoplasm" that arises in the heterotopic pancreas of the splenic hilum that is stated to be a "well-differentiated endocrine tumor, uncertain behavior per the WHO classification"? See Discussion.

SINQ 20120035 states that well differentiated pancreatic endocrine neoplasms should be reported with histology code 8240/3. However, the pathology report provides the WHO Classification which states "uncertain behavior." Should this tumor still be reported as 8240/3?

If reportable, how is the primary site coded? The tumor arose in heterotopic pancreas (in the splenic hilum), which is pancreatic tissue found outside the usual anatomical location of the pancreas. Per the pathology report, the tumor did not invade the spleen. Should the primary site be coded to C48.1 [mesentery]? The patient is female and the coding schema for "Peritoneum for Females" would apply to the case. However, none of those CS extension codes seem to apply to this localized case.

This case is reportable. Code the primary site to C25.9 [pancreas, NOS] and the histology to 8240/3 [neuroendocrine tumor (NET), Grade 1].

Per the 2012 SEER Manual, code the site in which the primary tumor originated. This neoplasm arose in pancreatic tissue and will behave accordingly, even though this pancreatic tissue is not located in the usual place.

Pancreatic endocrine and neuroendocrine neoplasms are essentially the same thing. However, they are described in two different WHO classifications; the endocrine classification and the digestive system classification. The digestive system classification is more recent, and is preferred by our expert pathologist consultant. The term "neuroendocrine" is to be used now, rather than "endocrine." In the pancreas, "well differentiated endocrine tumor" is synonymous with "neuroendocrine tumor (NET) Grade 1" and is coded 8240/3.

2012
20041058 Primary Site/Sarcoma--Breast: Is the primary site coded to C504 [upper-outer quadrant of breast] or C493 [ Connective, subcutaneous and other soft tissue of thorax ] for a tumor described as a "high grade soft tissue sarcoma present in the upper outer quadrant of breast"? If the sarcoma is primary in the breast, code the primary site to C504 [upper-outer quadrant of breast]. C500 - C509 includes soft tissue of breast. 2004
20041091 Primary Site/Summary Stage 2000/EOD-Extension--Lymphoma: How are these fields coded when a CT Impression states: Large retroperitoneal/abdominal mass resulting in extra-hepatic biliary obstruction & bilateral urinary tract obstruction & encasement of major vessels most c/w lymphoma? See Discussion.

CT findings state: Very lg sft tiss mass encasing pancreatic head & portion of body, splenic & portal veins, celiac axis, sup mesenteric artery & bilateral renal veins. Two components to this mass: 1) retroperitoneal mass encasing great vessels and 2) peritoneal component 10.8cm size, displaces bowel & other structures & encases vessels.

If the physician stated "this is bulky disease" would that change the EOD?

For tumors diagnosed 1998-2003:

Based on the information provided:

The topography code for this lymphoma is C772 [Intra-abdominal lymph nodes].

Code SEER Summary Stage 2000 to 5 [Regional NOS].

Code EOD Extension to 20. More than one lymph node region below the diaphragm is involved (retroperitoneal and peritoneal). The organs mentioned are not involved by the lymphoma. The bulk of the masses is causing obstruction by displacing and/or encasing organs.

A physician description of "bulky disease" would not change the EOD for this case.

 2004
20081021 Primary Site/Surgery of Other Site--Leukemia: If hairy cell leukemia is diagnosed at splenectomy, and 1 month later a bone marrow confirms the same diagnosis, is the primary site coded to spleen or bone marrow? If the site is bone marrow, is the splenectomy coded to 2 (regional) or 4 (distant) in the surgery field?

For cases diagnosed prior to 1/1/2010:Primary site:

Code the primary site to C421 [bone marrow] per primary site coding instructions for leukemia in the 2007 SEER manual, page 70.

Surgery of other site:

Since all surgical procedures for hematopoietic diseases are coded in the data item Surgery of Other Site, assign code 1 [Nonprimary surgical procedure performed].

For cases diagnosed 1/1/10 and later, refer to the Hematopoietic and Lymphoid Neoplasm Case Reportability and Coding Manual and the Hematopoietic Database (Hematopoietic DB) provided by SEER on its website to research your question. If those resources do not adequately address your issue, submit a new question to SINQ.

 2008
20081105 Primary site/Surgery of Primary Site--Lymphoma: What is the primary site for lymphoma involving lymph nodes and tonsil? Is a tonsillectomy coded as surgery for lymphoma? See Discussion.

6/1/2008 cervical lymph node biopsy showed lymphoma. A 6/3/2008 CT Chest/abdomen showed mediastinal and mesenteric lymphadenopathy. A 6/15/2008 tonsillectomy is performed for markedly enlarged right tonsil. Tonsil pathology reveals extensive lymphoma involvement.

Nothing in the chart specifies the primary site.

Should this be a C778 primary because of 3 lymph node areas plus tonsil (a lymphatic organ)? Or should it be coded to C099 Tonsil?

Is this tonsillectomy coded as surgical therapy? If so, is it surgery of primary site or surgery of other site?

For cases diagnosed prior to 1/1/2010:Code the primary site to tonsil (C099). This advanced stage lymphoma involves an extranodal site (tonsil) and that site's regional lymph nodes (cervical). The lymphoma has also spread to non-regional lymph nodes (mediastinal and mesenteric). Code the tonsillectomy as surgery of primary site.

For cases diagnosed 1/1/10 and later, refer to the Hematopoietic and Lymphoid Neoplasm Case Reportability and Coding Manual and the Hematopoietic Database (Hematopoietic DB) provided by SEER on its website to research your question. If those resources do not adequately address your issue, submit a new question to SINQ.

 2008
20031113 Primary site/Surgery of Primary Site/Surgical Procedure of Other Site--Unknown & ill-defined site: How are these fields coded for this type of primary site when a tumor excision and lymph node dissection is performed? See Description. Patient had a left parotidectomy w/ neck dissection in 02/2003. Findings showed a 10x5cm neck mass over the angle of the mandible as well as a 1.5 cm level 4 mass. Path showed invasive mod diff squamous cell ca. with posterior soft tissue margin positive for tumor; small portion of salivary gland had no tumor. Metastatic SCCa in 5 of 34 lymph nodes of neck dissection; no tumor in parotid lymph nodes. Pathology report says this could be a parotid carcinoma because the bulk of the disease is in the parotid, but it could also be metastatic...correlate with clinical findings. Doctor calls this unknown primary of the head and neck. Is this C80.9 or C76.0?

For cases diagnosed 1998-2003: The data item "Surgery of Primary Site" is intended to record only surgeries of the primary site. If the primary site is unknown or ill-defined, it is impossible to determine whether or not a particular surgery was performed on the primary site. "Surgical Procedure of Other Site" collects much less specific information; however, this is the correct data item to record surgery performed when the primary site is unknown or ill-defined.

For the case example, code the primary site as C76.0 [Head, face or neck, NOS]. Code Surgery of Primary Site as 98 [All unknown and ill-defined disease sites, with or without surgical treatment]. Code Surgical Procedure of Other Site as 1 [Non-primary surgical procedure performed].

 2003
20021152 Primary Site: Can we assume the primary site for "chordoma" is soft tissue if the bone is not stated to be involved?

Default the coding of the Primary Site field for chordomas to the bone where the tumor began in the body if the primary site is not clearly stated to be soft tissue. Bone is often the primary site for chordomas.

Based on advice from pathologist consultants: This is one of those situations where we can be quite comfortable with a default, in this case to bone, not soft tissue. Chordoma is a tumor arising in the nucleus pulposis, presumably from remnants of notochord - thus its exclusive origin is in the sacrococcygeal region, spheno-occipital region, and vertebral bodies, otherwise known collectively as the axial skeleton. Any "chordoma" in soft tissue (with no relationship to axial skeleton) is probably a myxoid chondrosarcoma or parachordoma (extremely rare).

 2002
20071062 Primary Site: For malignant gastrointestinal tumors (GISTs), how should the primary site be coded and which Collaborative Stage and TNM staging schemes should be used for disease found in the stomach, small intestine or other locations?

This answer was provided in the context of CSv1 coding guidelines. The response may not be used after your registry database has been converted to CSv2.Code the primary site to the location where the GIST originated. If the primary site cannot be determined, assign code C809 [Unknown primary site].

GIST of gastrointestinal hollow viscera cannot be staged in TNM.

In Collaborative Staging, use the stomach scheme for GIST of the stomach. Use the small intestine scheme for GIST of the small intestine. For GIST of other primary sites, use the CS scheme for the specific site.

 2007
20020046 Primary Site: How do we code site when endometrioid carcinoma arises in "endometriosis"? Code the Primary Site to where the endometriosis implanted, which may or may not be the endometrium. Endometrioid carcinoma can arise in the ovary, endometrium and other internal genital sites. The site/histology edit for endometrioid and ovary has been removed from the SEER edit set. 2002
20021100 Primary Site: How do we code the primary site for a malignancy that occurs in parenchyma located in an ectopic site? See discussion.

1. Patient presented with a subcutaneous nodule in right axilla. Pathologic impression by initial and reviewing pathologists is that the lesion represents a breast adenocarcinoma arising in ectopic mammary parenchyma. Subsequent breast biopsies were negative.

2. Patient presented with right branchial cleft cyst. The pathologist states the cyst is a primary thyroid adenocarcinoma arising in an ectopic focus of thyroid tissue. The subsequent total thyroidectomy is negative.

Code the primary site to the location of the malignancy.

1. Code the Primary Site field to C76.1 [Axilla NOS].

2. Code the Primary Site field to C10.4 [Branchial cleft].

 2002