Data Collection Answers from the CoC, NPCR, SEER Technical Workgroup
Updated February 20, 2013

A group of data collection experts from three standard-setting agencies has met regularly since July 2007. The American College of Surgeons Commission on Cancer (CoC), the Centers for Disease Control and Prevention National Program of Cancer Registries (NPCR), and the SEER Program of the National Cancer Institute collaborate to clarify coding rules and instructions. The group provides consensus answers to questions and develops approaches to new data collection issues.

These questions and answers have been published in the NAACCR Narrative and the NCRA Connection. The questions and answers are clarifications to existing coding rules and should be implemented immediately. New questions and answers will be added as they become available.

Questions by Category:

Reportability

Issue Decision
1.Ambiguous terminology: How is “likely” interpreted? Follow the ambiguous terminology list strictly as written. “Likely” is not on the list so the case is not reportable.
2. Are schwannomas reportable? Reportability depends on the primary site: When they originate in the intracranial (intradural) or intraspinal space they are reportable.
3. Is ovarian mucinous borderline tumor with foci of multifocal intraepithelial carcinoma reportable? Yes. The foci of intraepithelial carcinoma make this reportable. See the list of synonyms for in situ in the SEER and the FORDS manuals under the data item Behavior.
4. When are carcinoids of the appendix reportable?
  1. When a regional lymph node or nodes are positive for malignant metastatic carcinoid. See SEER Inquiry 20100050.
  2. When there are discontinuous malignant metastasis from the appendix carcinoid

Note: The metastases may be found at the same time as the primary carcinoid of the appendix or may occur years later.

5. Are VIN IIIs reportable? Yes for SEER and NPCR. No for CoC.
SEE: Table 2. NAACCR Layout Version 12: Comparison of Reportable Cancers: CoC, SEER, NPCR and CCCR in Chapter III of NAACCR Vol II, Fifteenth Edition.
6. Are bladder papillary urothelial neoplasms of low malignant potential (PUNLMPs) reportable? No. These are not reportable. PUNLMPs are pre-malignant growths in the upper urinary tract (renal pelvis, ureters, urinary bladder, part of the urethra).
7. Are cervical dysplasia, CIN III, and severe dysplasia of the cervix reportable? CIN III and carcinoma of the cervix in situ are no longer reportable to NPCR or CoC and are not reportable for SEER starting with cases diagnosed after 1/1/1996
8. Is high-grade dysplasia of the GI tract reportable? The AJCC and CAP protocols say high-grade dysplasia is synonymous with carcinoma in situ. Dysplasia is only reportable when it is specified as carcinoma in situ. Refer to the standard setters’ manuals and the table in NAACCR Volume II which defines reportability for each of the standard setters.
9. Are stage 1 GIST tumors reportable? In the past, tumor size and mitotic rate were used to determine if malignant, not stage. GISTs are to be reported based on the pathologist’s designation of tumor behavior, just as with all sites.
10. We are collecting some GIST cases at the direction of our pathologists. CoC offered that AJCC's comments can be taken as informational, but they do not define what is required to be reported to any particular standard setter. However, at least from CoC's perspective, any hospital is entitled to collect any non-required cases it chooses, but it may well be that neither NCDB nor the states will want those reported unless they specify in situ or behavior = 2. GIST is not reportable unless it is identified as being in situ or malignant. This question is an issue of reportability based on behavior and must be reviewed on a case by case basis. Do not enter these cases with a behavior code of /2 unless you have a way to flag them so they are not reported to NCDB or your state as an in situ case.
11. Appendix carcinoids should be reported when stated to be malignant in the pathology report or when there are discontinuous malignant metastases or metastases to regional lymph nodes. However, the CSv2 slides state clearly that carcinoids are not to be reported unless reportable by agreement. The CSv2 slides have been corrected.
12. There is some talk in Canada about allowing severe dysplasia of the colon to be equal to in situ cancer of the colon. Canada has a history of collecting /1 behavior neoplasia, so changing the behavior may not have as great an implication there. Yet Canada does want to follow the SEER counting rules and this will greatly increase the number of in situ cancers. SEER still holds to the idea that vocabulary of “dysplasia” is not coded, correct? The case would only be /2 if the words “in situ” also appear, regardless of any reference to dysplasia. Is that still correct? The reasoning was that pathologists did not all agree on the equality of severe dysplasia to in situ disease. In the US, the only time severe dysplasia is reportable is when it is documented by the pathologist as being synonymous with carcinoma in situ.

Hospital registrars may speak with their pathologists to determine whether their individual diagnosis of severe dysplasia is always equal to in situ. If so, written documentation must be included in the registry procedure manual and those cases would be reportable.

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Description of This Neoplasm

Issue Decision
1. How to code midline tumors? Code 5 (midline) was added to the laterality codes to be used for cases diagnosed 2010 and forward.
2. What site code should be used for angiosarcoma of breast? Code the primary site to breast (C50_). Although angiosarcoma actually originates in the lining of the blood vessels, an angiosarcoma originating in the breast has a poorer prognosis than many other breast tumors.
3. When a patient has neoadjuvant therapy, should grade be recorded from the original pathology report of the primary site (prior to neoadjuvant therapy) or from the resection (after neoadjuvant therapy)?
  • When there are two or more pathology reports, code grade from the pathology report prior to neoadjuvant therapy
  • When there is only one pathology report
    • Code the grade from the pathology report prior to neoadjuvant therapy
    • Code 9 (grade unknown)
      • When the pathology is after neoadjuvant therapy OR
      • It is unknown whether the pathology is before or after neoadjuvant therapy
4. Do we use the date of a suspicious cytology as the date of diagnosis? No, do not use the date of suspicious cytology as the date of diagnosis.
5. Can we assign laterality for sites other than those listed in the paired sites table? CoC and SEER had different instructions in 2009. Starting with the 2010 FORDS, CoC permits coding of laterality for non-paired organs. SEER has always allowed coding of laterality for non-paired organs.
6. Guidance needed on how to code diagnostic confirmation for hematopoietic and lymphoid neoplasms when immunophenotyping, genetics, etc. confirm the diagnosis. Code 3 is used for hematopoietic and lymphoid cases when three conditions are met:
  1. genetic testing and/or immunophenotyping are described in the Hematopoietic Database “Definitive Diagnostic Methods” field; AND
  2. genetic testing and/or immunophenotyping were done; AND
  3. the genetic testing and/or immunophenotyping were positive (proved the type of neoplasm being coded).
7. When coding diagnostic confirmation for hematopoietic and lymphoid neoplasms other than leukemia, is flow cytometry the basis for a positive hematologic findings, including peripheral blood smears, CBC, WBC? There are instructions to assign Code 1 for leukemia only for positive hem findings. Should these include other hem cases - e.g. JAK-2 or elevated counts for PV, etc. Flow cytometry is a test for immunophenotyping and also for genetic testing. It is coded for hematopoietic and lymphoid neoplasms using the directions in the previous question.
Code 1 is used for leukemia only and records a positive blood count (CBC or peripheral blood).
JAK 2 is a definitive diagnostic method for polycythemia vera and essential thrombocythemia. For coding instructions, see above.
8. How are dates recorded when cancer is diagnosed in utero, or prior to birth? Instructions were changed for cases diagnosed 2009 and forward. Record the actual diagnosis and treatment dates even when the dates are prior to date of birth.
9. A number of hematopoietic diseases were not reportable until 2010, including transformations and newly reportable diseases. If these diseases were diagnosed prior to 2010, are they included in the sequencing? If the original hematopoietic disease was not reportable at time of diagnosis, do not include it in the sequencing.
10. What are the equivalent terms to be used for behavior of /2? The list of terms synonymous with “in situ” was reviewed. The term non-invasive will be dropped from the list. Otherwise the list will remain as written in the FORDS and the SEER manual.

Update February 2013:
The term non-invasive will NOT be dropped from the list. The list of terms synonymous with “in situ” remains the same.
11. We know when suspicious cytology is followed by any of the following: path confirmation, clinical diagnosis by the physician or treatment, the date of the path diagnosis or clinical diagnosis or treatment is used as date of diagnosis. Now we wonder if those "but ifs" should be included in the directions. For example, if diagnosis is supported by other methods or if the doctor treats as malignancy. The FORDS manual and SEER manual both have instructions under the data item “Diagnostic Method” that give a hierarchy for coding the type of diagnosis. Both manuals instruct that the diagnostic method code should be changed when, for example, the first diagnosis was clinical and at a later date the cancer was histologically confirmed.
The case should not be accessioned based on suspicious cytology, and the date of suspicious cytology should not be used as the date of diagnosis even when proven to be a malignancy at a later date.
12. There are insufficient class-of-case codes for Non-COC, Non-hospital reporting facilities. Additional definitions have been incorporated in the FORDS.
13. How do we handle the new codes and terms for hematopoietic and lymphoid neoplasms that are not in ICD-O-3? Begin using new codes and terms for cases diagnosed in 2010. See Hematopoietic and Lymphoid Neoplasm Manual and Database for more information.
14. WHO has defined some new brain codes. How will these be handled? The new codes will be addressed in the MP/H revision.
15. Code C148 assigned for squamous cell carcinoma diagnosed from lymph node and deemed to be a head and neck primary but specific site could not be identified. Code C148 is based on note in ICD-O-3 indicating it should be used when a code between C000 and C142 cannot be assigned. I & R (46158) indicated it should be coded to C760. Assign C148 based on the note in ICD-O-3. C148 is a more specific site code than C760. The I & R answer has been revised.
16. For breast primaries, the SEER manual states "Code the subsite with the invasive tumor when the pathology report identifies invasive tumor in one subsite and in situ tumor in a different subsite or subsites." The FORDS manual does not include this instruction. This specific instruction from the SEER manual will also be added to the MP/H manual for all to follow.

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First Course of Therapy

Issue Decision
1. Brain surgery codes: Need clarification of surgery codes for lobectomy and gross total resection. CoC added new brain surgery codes for cases diagnosed in 2010.
20 Local excision of tumor, lesion or mass; excisional biopsy
21 Subtotal resection of tumor, lesion or mass in brain
22 Resection of tumor of spinal cord or nerve
30 Radical, total, gross resection of tumor, lesion or mass in brain
40 Partial resection of lobe of brain, when the surgery cannot be coded as 20-30
55 Gross total resection of lobe of brain (lobectomy)
2. Lymph node surgery codes: How to code excision of a single lymph node for lymphoma primaries. The coding depends upon how many nodes were involved with lymphoma.

  • If only one node is involved (clinical assessment), an excision of that node is coded 25 [Local tumor excision, NOS; Less than a full chain, includes an excisional biopsy of a single lymph node.] in Surgery of Primary Site.
  • If more than one node is involved, code an excision of a single lymph node in the field Surgical Diagnostic and Staging Procedure.
3. How to code tumor embolization.
  • Code as chemotherapy when patient has chemoembolization. Definition of chemoembolization: A procedure in which the blood supply to the tumor is blocked surgically or mechanically and anticancer drugs are administered directly into the tumor. This permits a higher concentration of drug to be in contact with the tumor for a longer period of time.
  • Code as radiation therapy when patient has radioembolization (code under RXSumm for SEER; code as brachytherapy for CoC in Rad-Regional RX modality). Definition of radioembolization: Embolization by injecting small radioactive beads or coils into a blood vessel feeding the tumor.
  • Code as other therapy (code 1) when patient has tumor embolization with alcohol. Definition of tumor embolization: The intentional blockage of an artery or vein to stop the flow of blood through the desired vessel.
  • Code as other therapy (code 1) when the only information is that the patient had tumor embolization.
4. Radiation therapy: How to code 125 seeds? Code as radioactive implants (code 2 in RXSumm for SEER)
Code as low dose brachytherapy (code 53) in Rad-Regional RX modality for CoC.
5. Surg/Rad Sequence: Definitions of 0 and 9 are different in the SEER manual and FORDS. CoC changed their codes to correlate with the SEER Manual effective with cases diagnosed 2010 and forward.
6. When the only information available is that the patient was referred to a radiation therapist, oncologist, etc., how should we code the referral? Code as treatment recommended, not confirmed as having been given (the code may be 8 or 88 depending on the treatment data item).
7. Should active surveillance (watchful waiting) be coded in new date item “RX Summary-Treatment Status?” Yes. Code 2 is used for active surveillance (watchful waiting).
8. How do we count regional lymph nodes positive and regional lymph nodes examined when there was a core needle biopsy or aspiration of a regional node followed by a regional lymph node dissection? Add 1 to the number of regional lymph nodes positive and examined when

  • The core biopsy or aspiration is positive for metastases AND
  • The lymph node dissection does not include the area where the core biopsy or aspiration was done AND
  • That lymph node was a regional lymph node for the primary site

Add 1 only to the number of regional lymph nodes examined when

  • The core biopsy or aspiration is negative for metastases AND
  • That lymph node was a regional lymph node for the primary site

Note: You would not add 1 to regional LN positive because the biopsy/aspiration was negative for metastases.

Do not add to the regional lymph nodes examined or positive when the area biopsied/aspirated is included in the dissection

9. All benign brain and CNS tumors other than pituitary adenomas have the rule to code scope of lymph node surgery as 9. Should this rule also apply to pituitary, craniopharyngeal duct, and pineal gland (C75.1-C75.3) be added to the primary list for this rule? Pituitary, craniopharyngeal duct, and pineal gland have been added to the list of sites for which code 9 applies in both FORDS and the 2010 SEER coding manuals.
10. Is systemic irradiation or total body irradiation (TBI) prior to bone marrow transplant coded as treatment? Yes, TBI or systemic irradiation is coded as treatment. Any chemotherapy given in preparation for the TBI is also coded as treatment. Both the irradiation and chemotherapy destroy cancer cells in the bone marrow.
11. How should regional treatment modality be coded when the patient receives I-125 for prostate cancer? Code to brachytherapy, low dose radiotherapy (LDR) code 53.
12. How do we code PUVA - [psoralen (P) and long-wave ultraviolet radiation (UVA)] when used for melanoma? Code PUVA as "Other treatment" with Code 1 - Other.
13. Why do we have codes for removal of the contralateral uninvolved breast? For example: Modified radical with or without the uninvolved contralateral breast. How important is this information? This information is becoming more important. The number of bilateral mastectomies has been increasing since a genetic marker was identified for breast cancer. There is a need to educate data collectors about the meaning of these codes.
14. Does the number of nodes removed affect whether you would code a simple mastectomy or a modified radical mastectomy? For example, if the patient had only a sentinel node biopsy, would the procedure be coded as a simple mastectomy or a modified radical mastectomy? Code a simple mastectomy when sentinel nodes are the only nodes removed. For all other procedures that remove lymph nodes code a modified radical mastectomy. There is no specific number of nodes removed that equals a lymph node dissection.
15. Breast reconstruction may be delayed for valid reasons (e.g., pt too thin at surgery). Should delayed reconstruction be coded in the field “Surgery of Primary Site?” If the reconstruction is included in the treatment plan, it is first course of treatment.
When a tissue expander is inserted at the time of surgery, code reconstruction.
16. Bladder primary site surgery reconstruction codes apply to males. Can we agree to drop reference to males and use same codes for all? What about intravesical and BCG installation? The code definitions have been rewritten for inclusion in the FORDS. Intravesical and BCG installation will not change until the next version of FORDS is written.
17. Should donor lymphocyte infusion be coded as treatment? Code as immunotherapy. The lymphocyte donation from the original donor creates an immune reaction to the cancer cells.
18. Should aspirin and phlebotomies still be coded as treatment for hematopoietic neoplasms? Yes, continue with current instructions.
19. How is neo-adjuvant therapy coded for a second primary discovered at surgery? For example, a patient had neo-adjuvant chemo for rectal ca. An A-P resection revealed intramucosal ca in adenomatous polyp in descending colon which was a second primary. The neo-adjuvant chemotherapy is recorded for both primaries.
For the second primary, use the date of diagnosis as the date of systemic therapy.
20. How should high intensity focused ultrasound (HIFU) used to treat prostate cancer be coded? Assign surgical code 17 - other method of local tumor destruction. HIFU, sometimes called FUS or HIFUS, is a high-intensity focused ultrasound that heats and destroys tissue.
21. When a chemo agent is used for radio-sensitizing, should it be coded as chemotherapy?
For example, Cisplatin used for radio-sensitization.
Do not code as chemotherapy when documented as being used for radio-sensitization.
22. How is the cumulative result of multiple surgeries coded? For example, the first procedure: ‘Nipple-sparing’ mastectomy with 5 sentinel lymph nodes removed. The second procedure: re-excision left mastectomy with left completion axillary dissection (14 nodes removed). There is a question about the code because the nipple is kept intact. Should this type of scenario be coded to cumulative modified radical mastectomy even though the nipple was not removed? Rationale for this is based upon the ACoS I&R 45322 for skin sparing mastectomy and the fact that this is reflective of the cumulative intent of the surgery (based upon physician statements). Code modified radical mastectomy - sparing the nipple is for cosmetic purposes only. Nipple sparing may be done to facilitate immediate reconstructive surgery.
23. Suggest adding one or more new codes for subcutaneous mastectomy because it is being used increasingly for breast cancer patients, and it is used specifically in conjunction with immediate reconstruction (to take advantage of sparing the skin). The current instructions identify the procedure as "rarely used for malignancies", and the current code structure does not allow for recording reconstruction. The code for subcutaneous mastectomy is 30, and the other codes in the 30s range are not in use for breast. The note “rarely used” was removed. FORDS revised for 2011 states “Cases coded 30 may be considered to have undergone breast reconstruction.”
24. Is the following interpretation of first course of treatment correct?

Woman has a biopsy of an enlarged axillary node on 02/01/09. She is informed of a breast cancer diagnosis a few days later. She does not comply with her treatment plan, and the physician loses contact with her. On 05/01/2009 she returns to the physician saying she's ready to be treated. May 10th, she has her lumpectomy/node dissection and makes plans for her radiation therapy.

The case is coded as follows: The first surgical event is the lymph node biopsy. For that surgical event, code Surgery of Primary Site as 00, Scope of Regional Lymph Node Surgery as 1, and Date of First Surgical Procedure as 02/01/2009. For the second surgical event, code Surgery of Primary Site as 22, Scope of Regional Lymph Node Surgery as 3, and Date of Most Definitive Surgical Resection as 05/10/2009. However, because of the instruction on how to code Date of First Course of Treatment (earliest of Date of First Surgical Procedure, Date Radiation Started, Date Systemic Started, Date Other Tx Started), it is coded as 02/01/2009. In the system, it looks like she started treatment in February when she didn't have any treatment until May.

This is correct at the present time. It may be evaluated in the future.
25. Surgical diagnostic procedures: What is the code for bone marrow (BM) biopsy for stage IV large B-cell lymphoma (LBCL)? 01 is for biopsy to other than primary and 02 is done to primary site or removal of node to diagnose or stage lymphoma. In most cases, bone marrow is not the primary site for B-cell lymphomas. However there are a number of B-cell lymphomas and since it is unknown to which B-cell lymphoma you are referring, we will assume that the primary site is not BM. Code the BM biopsy 01 - biopsy of other than primary site.
26. Post-transplant patients may develop a malignant myeloproliferative neoplasm. When immunosuppression drugs are stopped, the myeloproliferative neoplasm usually subsides. Is the elimination of immunosuppression treatment codable as other treatment? Do not code as a treatment. Record the cessation of immunosuppressive drug treatment in text to explain the patient’s change in disease status.

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Other

Issue Decision
1. What is the priority for coding Primary Payer at Diagnosis? The patient may have several admissions for the tumor being reported. Which payer should be selected if there are multiple payers? The priority order is
1. Record Primary payer from the information available at diagnosis.
2. When primary payer at diagnosis is unknown, record the information available during the initial treatment period.

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