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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. | Updated May 2026 In the Heme DB, there is a note in 9751/3 that states if primary site cannot be determined for LCH, code the primary site to C419 [bone, NOS].
This patient has widely metastatic disease. 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. |
2013 |
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20130195 | Laterality--Heme & Lymphoid Neoplasms: Is laterality coded to 0 [not paired] for all lymphoma cases including paired sites (e.g., breast, lung)? | Updated May 2026 Laterality coding for lymphomas is based on the primary site not histology. Laterality describes the side of a paired organ or side of the body on which the reportable tumor originated. Determine whether laterality should be coded for each primary.
Laterality coding instructions are located in the SEER Program Coding and Staging Manual. |
2013 | |
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20100018 | Reportability/Heme & Lymphoid Neoplasms--Hematopoietic, NOS: Is light chain disease reportable if it is treated with chemotherapy agents? See Discussion. | A patient was diagnosed in 2010 with light chain disease based on SPEP and urine testing. Bone marrow aspiration and biopsy were done. Flow cytometry, cytogenetic studies and FISH for plasma cell disorders are all normal. Medical oncologist states diagnosis is light chain disease. Patient was started on Revlimid, dexamethasone and Velcade.
In reviewing the case reportability instructions, this seems to fall under Instruction 1, note 1. Immunoglobulin deposition disease, preferred term for light chain disease, is coded as 9769/1. This is normally a non-reportable diagnosis, but the patient was given cancer-directed treatment. Would this case be accessioned using the above morphology code and primary site of bone marrow [C42.1]? |
Updated May 2026 Light chain disease (9769/1) is not reportable for any year of diagnosis. See the Hematopoietic Database for further information.
Light chains are produced in neoplastic plasma cells (multiple myeloma) and are called Bence-Jones proteins. The physician did the cytogenetic studies and FISH to rule out plasma cell disease. 50-60% of people with Light-chain deposition disease (LCDD) have an associated lymphoproliferative disorder, most commonly multiple myeloma. The remaining patients develop LCDD in the setting of progression of monoclonal gammopathy of unknown significance (MGUS) with no evidence of neoplastic plasma cell proliferation. This patient falls in this category, MGUS, which is not reportable. |
2010 |
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20100096 | Multiple primaries--Heme & Lymphoid Neoplasms: How many primaries are accessioned when a 9/30/10 biopsy diagnoses follicular lymphoma, grade 1 and the patient is subsequently diagnosed on a 10/11/10 biopsy with large B-cell lymphoma which is stated to be a transformation of the prior lymphoma? | Updated May 2026 Per Rule M11, this case is to be accessioned as two primaries: follicular lymphoma, grade 1 [9695/3] and diffuse large B-cell lymphoma (DLBCL) [9680/3]. The case represents a chronic neoplasm (follicular lymphoma, grade) and an acute neoplasm (diffuse large B-cell lymphoma) which was diagnosed after the initial clinical workup of the chronic disease was completed and there is documentation of two biopsies, one confirming the chronic disease and the other confirming the acute disease. |
2010 | |
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20130178 | Reportability--Heme & Lymphoid Neoplasms: Is refractory iron deficiency anemia reportable? | Updated May 2026 Refractory iron deficiency anemia is not reportable for any year of diagnosis. It is not a clonal disorder and, therefore, is not malignant. Refractory iron deficiency anemia is a condition that is unresponsive to oral iron treatment. |
2013 | |
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20100022 | Multiple primaries/Histology--Heme & Lymphoid Neoplasms: Is a 2010 diagnosis of ALK+ anaplastic T cell lymphoma following a 2008 diagnosis of follicular B cell lymphoma, grade 1 a new primary? If so, how is the histology coded? See Discussion. | A patient has a history of Stage 4 follicular B cell lymphoma, grade 1 [9695/3] diagnosed in 2008. The patient was treated with Adriamycin, Cytoxan, Rituxan, and Prednisone. In 2010, the medical oncologist states the patient has progression/recurrence of lymphoma with pathology that has changed to anaplastic T cell lymphoma ALK+. There was immunophenotyping, but there was no more specific diagnosis made. The patient died within 3 months. | Updated May 2026 Rule M15 applies to this case which instructs you to use the Multiple Primaries Calculator. The result for 9695/3 and 9714/3 is "New Primary."
Abstract the anaplastic T cell lymphoma as a new primary. Code the histology to 9714/3 [Anaplastic large cell lymphoma, ALK-positive].
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2010 |
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20130125 | Reportability--Heme & Lymphoid Neoplasms: Is self-healing Langerhans cell histiocytosis (LCH) of the skin reportable? | Updated May 2026 Self-healing LCH usually happens when the disease is confined to the skin. The term "self-healing" means that the neoplasm regressed without treatment. This is a known phenomenon.
This is a reportable primary as Langerhans cell histiocytosis (LCH) [9751/3] for years 2010-2020.
Starting in 2021, this would be 9751/1 and only be reportable if it occurred in the CNS. |
2013 | |
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20140017 | Multiple Primaries--Heme & Lymphoid Neoplasms: 2012 path report for removal of an "axillary mass" which consists of 80% diffuse large B-cell lymphoma (DLBCL) and 20% follicular lymphoma. In the original manual, Module 6 instructed us to code as a single primary, DLBCL. However, the multiple primary calculator says each disease is a separate primary. When I looked them up in the data base, I did not get an option to review a current manual. Can you please advise? |
Updated May 2026 The Multiple Primaries calculator is not applicable for this case. In this case, there are two NHLs in the same location at the same time. Apply Rule M4, this is one primary. Per Note 7 under Rule M4, go to Rules PH11and PH15 to assign primary site and histology. Rule PH11 states to code to the site of the origin (axillary mass) and to diffuse large b-cell lymphoma (9680/3) when DLBCL and any other non-Hodgkin lymphoma (follicular in this case) are present in the same location at the same time. Code as a single primary with histology Diffuse Large B-Cell Lymphoma.
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2014 | |
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20110018 | Multiple primaries--Heme & Lymphoid Neoplasms: How many primaries are to be abstracted for a case with a history of follicular lymphoma, grade 2 and a subsequent splenectomy diagnosis of diffuse large B-cell lymphoma? See Discussion. |
The patient was treated over a period of time for follicular lymphoma, grade 2. The oncologist thought the spleen was congested and removed it. The diagnosis was DLBCL. |
Updated May 2026 This case is accessioned as two primaries per Rule M10 which states to abstract multiple primaries when a neoplasm is originally diagnosed as a chronic neoplasm and there is a second diagnosis of an acute neoplasm after the initial clinical workup of the chronic disease is completed. The first primary is follicular lymphoma, grade 2 [9691/3] and it is a chronic neoplasm. The second primary is diffuse large B-cell lymphoma (DLBCL) [9680/3] and it is an acute neoplasm |
2011 |
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20130073 | Reportability--Brain and CNS: Is Rosai-Dorfman disease a neoplastic reportable disease process if it occurs in the brain? See Discussion. |
The pathology report diagnosis is: Cranium, right temporal area, resection of intradural, extra-axial mass: Severe acute and chronic inflammation, histiocytic reaction, and proliferative fibrosis. See comment. Comment: Among potential alternative considerations are an infectious process, or non-infectious inflammatory CNS lesions such as inflammatory pseudotumor, Rosai-Dorfman disease, plasma cell granuloma, idiopathic hypertrophic pachymeningitis, and inflammatory myofibroblastic tumor. The clinicians discuss this and review other chart information and conclude the patient has a clinical diagnosis of Rosai-Dorfman disease. This is a rare disorder characterized by proliferation of histiocytes. |
Updated May 2026 This case is not reportable for cases diagnosed prior to 2021. Rosai-Dorfman disease is not listed in the ICD-O-3. To be reportable, a neoplasm must be listed in the ICD-O-3 and originate in a reportable brain/CNS site. For cases diagnosed 2021+, Rosai-Dorfman disease is reportable as 9749/3. |
2013 |
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