Resources for Registrars: Coding Q & A

UCR Inquiry Form for Utah Hospital Registrars

UCR has implemented a new web based communication tool for requests from hospital based certified tumor registrars. This tool is available here

Please use this form to submit registry related questions which will be answered by UCR Certified Tumor Registrars. We will post select questions and answers below.

Questions and Answers

How is 'uncertain significance' in other genes coded for HBOC data item Germline Other Gene Results, Not BRCA?


Code 0 for variants of unknown or uncertain significance. There will be an update to the Utah HBOC Guidelines.
The answer to this inquiry was provided by a hospital genetic counselor. The genetic counselor stated this would still be classified as a variant of uncertain (unknown) significance. Some lab reports name things differently, but there are only 3 results they can return - positive, negative, or uncertain (unknown) - mark code 0.

References: Consulted with genetic councelor.


Can a drug be coded as treatment for a certain cancer if that primary site or type of cancer is not listed in the SEER*Rx entry for that drug?


Yes, in general if the physician states a certain drug is being given to treat a cancer that is not listed in the SEER*Rx entry for that drug, registrars should code it. If the reason or intent of giving the drug is not stated in these situations (for example, when there is no treatment plan), registrars should not code it as treatment.

Please note that SEER*Rx occasionally instructs coding a drug as a different treatment category, when given for an unusual primary site (off-label use); for example the SEER*Rx listing for Lupron, typically categorized as Hormone therapy, currently states that it should be coded as Other Therapy when given for breast cancer since it is still in clinical trials. For this reason, always check the full entry for each drug in SEER*Rx, including the Remarks section; these are updated over time with new drug approvals for various sites and cancers.

References: SEER Inquiry System (SINQ) questions 20120090, 20120056, 20021042, and 20150026.


According to the new Solid Tumor Rules for 2018, NF I and NF II are not reportable as they are both syndromes. However, it is my understanding that the tumors associated with the syndromes ARE reportable. So, for example, if the patient has NF I and multiple meningiomas, the NF 1 itself is not reportable but the meningiomas are. Am I correct in this?


Yes, that is correct. Please refer to the notes on Table 4 on page 18 of the 2018 Non-malignant CNS Solid Tumor module, under Neurofibromatosis, types 1 and 2. In the "Definitions and Sites" column, it says "The brain and CNS tumors spawned by NF1 are reportable, the genetic disease is not." 

Also, Rule H2 states "Code the reportable CNS tumor (Table 6 in the Equivalent Terms and Definitions) when a patient has any of the following: Neurofibromatosis type 1 (NF1), Neurofibromatosis type 2 (NF2), Schwannomatosis. Notes 4 & 5: When tumors meet the behavior code, site, and histology reportability requirements (see Reportability Criteria) those tumors are reportable...Example: Patient presents with vestibular schwannoma (acoustic neuroma). Genetic testing proves the patient has NF2. Report the acoustic nerve neuroma."

Please note that before 2018, neurofibromatosis itself was reportable as a separate primary (C72.9 9540/1) when it occurred with reportable CNS neoplasms.

References: SEER Inquiry System (SINQ) questions #20051108, 20061018, 20081126, and 20091127.


What histology would you choose for a 2018 breast case with the final of "invasive mixed ductal and mucinous carcinoma"? Several of us are confused on the instructions utilizing tables 2 and 3.


Based on the information provided, "Invasive mixed ductal AND mucinous carcinoma", assuming it's a single tumor, the histology would be coded 8523/3 per 2018 Solid Tumors rule H17 and Table 2 -- duct carcinoma AND any histology in Table 3 except lobular or Paget's. 

Rule H10 wouldn't apply because it wasn't stated as "mucinous duct carcinoma", it was clearly two histologies, mucinous AND ductal, and the percentage of mucinous is unknown. H14 & H15 would not apply because mucinous has its own row in Table 3, indicating it's NOT a subtype of any other histology, and there's also a note under it in Table 3 that says "Mucinous carcinoma is not a subtype/variant of Carcinoma NST/duct carcinoma." In addition, mucinous is not listed anywhere in the subtype column of Table 3. We can't use H16 because it is unknown which histology was the majority, so that leads to H17 and Table 2, second row for the combination code 8523/3.

References: SEER 2018 Solid Tumor Rules Manual


Patient with metastatic atrial myxoma. I know that is generally a benign condition that is not reportable. Since it became metastatic is it considered malignant and/or reportable?


This is a good question because for many benign tumors, metastasis can make them reportable (for example, see SINQ #20140021). However, we submitted this case to Ask-A-SEER-Registrar because we weren't sure if that applied to this type of tumor, and their answer was "Cardiac myxomas are benign neoplasms and are never considered to be malignant; the 'mets' documented in the case would be more appropriately called an "embolus" and does no confer malignancy. NOT A REPORTABLE CASE." 

They explained further, "We asked our pathologist advisor: Cardiac myxomas are benign neoplasms. Alternatively, some have argued they are hamartomas or organized thrombi, but they are not considered malignant. However, portions of them may break off and enter the circulation. Because this myxoma is in the left atrium any portion which breaks off may enter the systemic circulation, which includes the brain as well as other organs. (Any tumor on the right side of the heart would have access to the pulmonary circulation.) So, in this case the metastasis (it would probably be more appropriate to call it an embolus) does not confer malignancy! (Left atrial thrombi in hearts with atrial fibrillation may also give rise to emboli to the brain, a common cause of stroke in untreated cardiac arrhythmias.) The direct answer to the question is "no", benign tumors do not automatically become malignant with metastasis."  

References: SEER Inquiry System (SINQ) #20140021, Ask-A-SEER Registrar


I have a head and neck case where the patient was diagnosed at an outside facility on biopsy. The pathology was read as spindle cell malignancy, differential diagnosis sarcoma or carcinoma, favor SARCOMA. Our facility re-read the path as spindle cell malignancy, favor CARCINOMA. The final path resection says malignant spindle cell neoplasm. Per head & neck solid tumor rules histology priority notes, I should code the most specific histology, which would exclude the resection histology. I do not see a note about coding the higher ICD-O code for Head & Neck, so I was uncertain which histology should take precedence.


Per page 131 of the Solid Tumor Rules, Head and Neck Histology section, we are instructed to code the specific histology described by ambiguous terminology ONLY when that's the only diagnosis available, or the specific ambiguous histology is clinically confirmed by a physician, or the patient is receiving treatment based on the specific ambiguous histology.

If you have a clinical statement by the physician calling the tumor either sarcoma or carcinoma, or that the patient is being treated for sarcoma or carcinoma, you would code whichever one s/he specified. If not, you would have to code the NOS term, spindle cell malignancy/neoplasm, 8004/3.

References: 2018 Solid Tumor Rules Manual

Contact Us

Utah Cancer Registry

250 East 200 South, Suite 1375
Salt Lake City, UT 84111

Phone: 801-581-8407
Fax: 801-581-4560