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Report Produced: 02/14/2026 17:18 PM

Report Question ID Question Discussion Answer Year
20130205 MP/H Rules/Multiple primaries--Breast: How many primaries are reported and what is the histology for each in a case of infiltrating duct and lobular carcinoma of the breast (8522) with Paget disease of the same breast? Abstract as two primaries according to rule M12. We interpret this as one tumor with infiltrating duct and lobular carcinoma (8522) and a second tumor with Paget disease (8540). 2013
20130027

Reportability--Are well-differentiated neuroendocrine tumors and grade 1 neuroendocrine tumors of the appendix now reportable? See Discussion.

The terminology for carcinoid tumors has changed. The current terminology used is "neuroendocrine tumor." Are well-differentiated neuroendocrine tumors of the appendix non-reportable because carcinoid, NOS of the appendix has a borderline behavior code [8240/1]? When the histology/behavior codes for the term "well-differentiated neuroendocrine tumor" became 8240/3, did SEER intend this change to also apply to appendix primaries? If so, for which diagnosis year did this change go into effect?

Well-differentiated neuroendocrine tumors and grade 1 neuroendocrine tumors of the appendix are reportable because these tumors have a morphology code 8240/3 per the WHO Classification of Tumors of the Digestive System. However, per the ICD-O-3, carcinoid tumors of the appendix have a behavior code of /1 [borderline].

The terminology of neuroendocrine tumors is evolving and current thinking at the international level is that carcinoid/WD NET of appendix is reportable. However, reportability in the United States is based on ICD-O-3. The histology code for "Carcinoid of appendix" is 8240/1; the histology code for a carcinoids of all other primary sites is 8240/3. Until the United States adopts the proposed changes for ICD-O-3, reportability of appendix cases is as follows:

  • Carcinoid
  • Well-differentiated neuroendocrine tumor
  • Grade 1 neuroendocrine tumor
  • Well-differentiated neuroendocrine tumor/carcinoid (Pathologist uses both terms in reporting the diagnosis and does not want to choose one diagnosis over the other.)
 2013
20130194

Reportability--Brain and CNS: Are blood vessel tumors arising in CNS sites reportable? See Discussion.

Previous instructions from the CDC (Cancer - Collection and Coding Clarification for CNS Tumors - NPCR) stated that non-malignant blood vessel tumors in CNS sites are reportable and should be coded to the CNS site in which they arose. SINQ 20081113 also states that a blood vessel tumor, cavernoma/cavernous hemangioma, in the brain is reportable. However, SINQ 20120034 contradicts this previous answer stating the site should be coded to C490 [blood vessel] for a blood vessel tumor (venous angioma) in the brain.

If blood vessel tumors arising in a CNS site are no longer reportable, please specify the site/histology codes for these non-reportable tumors and when this change took place.

Vascular tumors of the CNS are reportable when they arise in the dura or parenchyma of the CNS and should be coded accordingly. The instructions in the CDC book regarding primary site coding are not the most current instructions.SEER assumed responsibility for brain and CNS reporting instructions in 2007.

The tumor in SINQ 20120034 is not reportable because it arises in a blood vessel. The cavernous hemangioma in SINQ 20081113 is reportable because the primary site is the white matter of the cerebral cortex.

 2013
20130147 Primary site--Heme & Lymphoid Neoplasms: What the primary site for a diagnosis of Langerhans cell histiocytosis with multifocal multisystem involvement of the skin, chest, CNS and thyroid, but no evidence of involvement on a bone scan?

For cases diagnosed 2010 and forward, access the Hematopoietic Database at http://seer.cancer.gov/seertools/hemelymph.

Code the primary site to C809 [unknown].

Langerhans Cell Histiocytosis (LCH) includes three major groups:

  • Unifocal: Slowly progressing disease, involves one organ.

  • Multifocal unisystem: Involves several organs in one system.

  • Multifocal multisystem: Involves several organs in two or more systems.

    • When the disease is both multifocal and multisystem, code the primary site to unknown [C809] because there is no way to identify the origin of the neoplasm in this situation.

    SEER*Educate provides training on how to use the Heme Manual and DB. If you are unsure how to arrive at the answer in this SINQ question, refer to SEER*Educate to practice coding hematopoietic and lymphoid neoplasms. Review the step-by-step instructions provided for each case scenario to learn how to use the application and manual to arrive at the answer provided. https://educate.fhcrc.org/LandingPage.aspx.

    		2013
    		20130213 Primary site--Heme & Lymphoid Neoplasms: How do you code the primary site for a marginal zone lymphoma involving bilateral axillary lymph nodes and inguinal lymph nodes, bone marrow and bilateral orbits that the physician refers to as a bilateral orbital lymphoma, Stage IV? See Discussion.

    None of the rules seem to apply when the lymphoma is present in an organ, distant lymph nodes and bone marrow only. No regional nodes are involved.

    Does rule PH22 infer that the organ should be coded as the primary site because it has been named by the physician?

    For cases diagnosed 2010 and forward, access the Hematopoietic Database at http://seer.cancer.gov/seertools/hemelymph.

    Per Rule PH24, code primary site to orbit. According to Rule PH24, one is to code the primary site to the organ when lymphoma is present only in an organ. Note 2 under this rule also instructs one to capture the secondary involvement of distant lymph nodes and/or bone marrow in CS extension fields.

    If the physician had not confirmed the primary site as orbit, you would have used Rule PH22 when the primary site is not indicated.

    SEER*Educate provides training on how to use the Heme Manual and DB. If you are unsure how to arrive at the answer in this SINQ question, refer to SEER*Educate to practice coding hematopoietic and lymphoid neoplasms. Review the step-by-step instructions provided for each case scenario to learn how to use the application and manual to arrive at the answer provided. https://educate.fhcrc.org/LandingPage.aspx.

    		2013
    		20130083 Ambiguous terminology/Histology--Heme & Lymphoid Neoplasms: How is the histology coded if an FNA reveals high grade B-cell lymphoma, compatible with diffuse large B-cell lymphoma, and the treating physician states this is diffuse large B-cell lymphoma? See Discussion.

    The FNA showed high grade B-cell lymphoma, morphologically compatible with diffuse large B cell lymphoma. Special studies state: Tumor cells are positive for Vimentin, CD45, and CD20, focally weakly positive for CD43; negative for Myeloperoxidase, CD99, AE1/AE3, CK7, CK20, S100, CD3, cyclin D1, CD34, CD5 and TTF1. The cellular findings and immunophenotype are compatible with large B-cell lymphoma.

    The treating physician refers to this disease process and is treating the patient for diffuse large B-cell lymphoma. Should the histology be coded as B-cell lymphoma, NOS (9591/3) because both the FNA and the immunophenotyping use ambiguous terminology? Does the physician reference to the disease process as diffuse large B-cell lymphoma, Stage II-AE impact the histology used?

    For cases diagnosed 2010 and forward, access the Hematopoietic Database at http://seer.cancer.gov/seertools/hemelymph.

    Code the histology to diffuse large B-cell lymphoma [9680/3] because the physician states this is a DLBCL and is treating the patient accordingly. Although the pathology report was only compatible with DLBCL, there was a subsequent clinical diagnosis that confirmed a diagnosis of DLBCL. In addition, the patient was treated for DLBCL.

    SEER*Educate provides training on how to use the Heme Manual and DB. If you are unsure how to arrive at the answer in this SINQ question, refer to SEER*Educate to practice coding hematopoietic and lymphoid neoplasms. Review the step-by-step instructions provided for each case scenario to learn how to use the application and manual to arrive at the answer provided. https://educate.fhcrc.org/LandingPage.aspx.

    		2013
    		20130013

    Reportability--Heme & Lymphoid Neoplasms: Is Mast Cell Activation Syndrome (MCAS) reportable?

    MCAS has been given an ICD-9 code of 202.60 by our medical record coders. In the Progress Notes, the physicians state this is not the same as systemic mastocytosis. There is no listing for MCAS in the Hematopoietic and Lymphoid Database.

    Mast Cell Activation Syndrome (MCAS) is not a reportable neoplasm unless it is specifically stated to be a result of a mast cell proliferative disorder that is reportable.

    Per our expert pathologist, MCAS is a relatively new term used for conditions in which patients experience the symptoms of mast cell mediators in the absence of an increase/proliferation of mast cells. The diagnosis of this group of disorders is based in part on a complex of symptoms and on the demonstration of no increase in mast cells. Some of these diseases are difficult to separate from mastocytosis (which is reportable). Currently, this group of disorders is not part of the systemic mastocytosis/mast cell leukemia/mast cell sarcoma spectrum.

    		 2013
    		20130183

    Reportability--Heme & Lymphoid Neoplasms: Is a peripheral blood finding consistent with involvement by monoclonal, lambda-restricted mature B cell population with co-expression of CD5 and CD23 reportable if, immunophenotypically, the case is consistent with a chronic lymphocytic leukemia/small lymphocytic lymphoma? See Discussion.

    Peripheral blood: Final diagnosis: Leukocytosis absolute lymphocytosis monoclonal, lambda restricted B-cell population w/co-expression of CD5 and CD23 absolute increase in CD4=helper T cells. See comment.

    Comment: Peripheral blood findings are consistent with involvement by monoclonal, lambda-restricted mature B cell population with co-expression of CD5 and CD23, which is immunophenotypically consistent with a chronic lymphocytic leukemia/small lymphocytic lymphoma immunophenotype. However, the absolute monoclonal population is only 3.02k/ul.

    According to WHO criteria, in the absence of extramedullary tissue involvement, the monoclonal lymphocyte population must be greater than or equal to 5.0 k/ul. Therefore, in the absence of clinical evidence of extramedullary tissue involvement, the diagnosis is most consistent with a monoclonal B cell lymphocytosis. Review of initial analysis reveals well-defined groups of cells within lymphocyte, monocyte and granulocyte gates as defined by CD45 and sid-scatter characteristics (%'s are listed). Overall, peripheral blood findings are consistent with involvement by monoclonal, lambada-restricted B cell population with a chronic lymphocytic leukemia/small lymphocytic lymphoma immunophenotype.

    For cases diagnosed 2010 and forward, access the Hematopoietic Database at http://seer.cancer.gov/seertools/hemelymph.

    This case is reportable. Code histology to 9823/3 [CLL/SLL].

    Ambiguous terminology is used to accession cases (determine reportability) because it has been used for over 30 years to do so. Any deviation from using ambiguous terminology to determine case reportability would cause the reporting of incidence counts to vary. In this case, there was a reportable, ambiguous terminology diagnosis on peripheral blood that is "consistent with" involvement by chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) immunophenotype.

    The ambiguous terminology "consistent with" in the flow cytometry report is acceptable to determine reportability. Given that it is the only reportable histology mentioned in the scenario, it is also used to code histology. The instruction "Do not code histology based on ambiguous terminology" is intended to be used when there is a reportable NOS histology and reportable more specific histology stated in the diagnosis. Ambiguous terminology cannot be used to report the more specific diagnosis in cases of Heme & Lymphoid neoplasms.

    SEER*Educate provides training on how to use the Heme Manual and DB. If you are unsure how to arrive at the answer in this SINQ question, refer to SEER*Educate to practice coding hematopoietic and lymphoid neoplasms. Review the step-by-step instructions provided for each case scenario to learn how to use the application and manual to arrive at the answer provided. https://educate.fhcrc.org/LandingPage.aspx.

    		 2013
    		20130002

    Multiple primaries--Heme & Lymphoid Neoplasms: How many primaries are accessioned, and what is the year of diagnosis, when the patient was initially diagnosed with poorly differentiated, diffuse lymphocytic lymphoma, small cleaved cell [9591/3] in 1991, followed by multiple recurrences and transformations? See Discussion.

    5/1991 Left groin biopsy: Poorly differentiated, diffuse lymphocytic lymphoma, small cleaved cell [9591/3].

    Subsequently, the patient had multiple recurrences.

    7/1/08 Left axillary biopsy: Disease transformed to malignant lymphoma, large B-cell and a small focus of follicular lymphoma.

    Patient was followed until there was no evidence of disease.

    4/22/10 Left axillary biopsy: Recurrence of follicular lymphoma, grade 1. No large cell component was found. The bone marrow biopsy was negative for lymphoma. The patient was on observation.

    11/02/10 MD note indicates the disease progressed to follicular lymphoma, grade 3. No large cell component was identified. The patient clinically has no evidence of disease on maintenance Rituxan.

    For cases diagnosed 2010 and forward, access the Hematopoietic Database at http://seer.cancer.gov/seertools/hemelymph.

    This case should be accessioned as a single primary, non-Hodgkin lymphoma (previously called poorly differentiated, diffuse lymphocytic lymphoma, small cleaved cell) [9591/3] diagnosed in 1991.

    Determining the number of primaries is based on the rules in effect at the time of each diagnosis. The original lymphoma was diagnosed in 1991 and the first transformation to follicular lymphoma in 2008. The pre-2010 rules for coding histology and determining multiple primaries must be applied first because the rules changed for diagnoses occurring 2010 or later. Per the Single Versus Subsequent Primaries Table, poorly differentiated, diffuse lymphocytic lymphoma, small cleaved cell [9591/3] is the same primary as follicular lymphoma [9690].

    The Heme DB and Manual are used to confirm that the 2010 recurrences of follicular lymphoma, grade 1 [9695/3], and follicular lymphoma, grade 3 [9698/3], are the same primary according to the Heme Calculator check required per Rule M15. Per the Heme DB page, the diagnoses follicular lymphoma, grade 3 [9698/3] and follicular lymphoma, grade 1 [9695/3] are comparable to follicular lymphoma [9690] as stated in the section.

    SEER*Educate provides training on how to use the Heme Manual and DB. If you are unsure how to arrive at the answer in this SINQ question, refer to SEER*Educate to practice coding hematopoietic and lymphoid neoplasms. Review the step-by-step instructions provided for each case scenario to learn how to use the application and manual to arrive at the answer provided. https://educate.fhcrc.org/LandingPage.aspx.

    		 2013
    		20130118 Primary site--Heme & Lymphoid Neoplasms: How is the primary site coded for a diagnosis of Langerhans cell histiocytosis with extensive bony metastatic disease and lymphadenopathy? See Discussion. Patient was diagnosed with LCH on a biopsy of the right femur. Imaging showed extensive bony metastatic disease, extensive infiltrative perinephritis, encasement of both kidneys, renal hilar, retroperitoneal and periaortic lymphadenopathy. The right femur biopsy pathology report did not state this was metastatic.

    For cases diagnosed 2010 and forward, access the Hematopoietic Database at http://seer.cancer.gov/seertools/hemelymph.

    Code the primary site to C419 [bone, NOS] per Rule PH30.

    This patient has widely metastatic disease. Per Rule PH30, one needs to reference the Heme DB to determine the primary site and histology for this case. Per the Abstractor Notes section, Langerhans cell histiocytosis arises in the bone and many times can involve multiple bones, along with other organs and lymph nodes. Although the right femur was biopsied, this does not prove that the primary site is the femur [C402] because the patient has what was described as extensive bony metastatic disease.

    SEER*Educate provides training on how to use the Heme Manual and DB. If you are unsure how to arrive at the answer in this SINQ question, refer to SEER*Educate to practice coding hematopoietic and lymphoid neoplasms. Review the step-by-step instructions provided for each case scenario to learn how to use the application and manual to arrive at the answer provided. https://educate.fhcrc.org/LandingPage.aspx.

    		2013