According to the Reporting Requirements, all cases of primary malignant disease diagnosed or treated at a Kentucky hospital on or after January 1, 1991 are required to be included. These are usually described by the terms: carcinomas, sarcomas, melanomas, leukemias, and lymphomas. The primary reference book which lists all malignant diseases is the International Classification of Diseases for Oncology (ICD-O), third edition. In addition to providing a list of all morphologies considered to be malignant (or cancerous), the ICD-O book also contains cell behavior codes: 0=benign, 1=borderline malignancy, 2=in-situ, 3=malignant primary, 6=malignant metastasis, and 9=malignant, unknown if primary or metastatic. All malignancies with a behavior code of 2 or 3 in ICD-O, 3rd edition, should be included in the registry, except specified neoplasms of the skin and preinvasive cervical neoplasia, as described in Case Reporting Requirements. Benign and borderline CNS tumors diagnosed on or after January 1, 2004 are required to be reported.

Other benign tumors and borderline malignancies (behavior codes 0 and 1) may be listed in the registry in a separate accession register. They should not be entered into CPDMS.net. These diagnoses are referred to as "reportable-by-agreement" cases.

Metastatic tumors and tumors that are unknown if primary or metastatic (behavior codes 6 and 9) are indicative of a primary malignancy of an unknown site. These cases should be reported with the primary site coded as "unknown primary" (topography code of C80.9) and the appropriate morphology code with a behavior code of /3.

  1. Inconclusive diagnostic terms

Occasionally the diagnosis contains vague or inconclusive terms, such as probable carcinoma of the lung. The following terms are considered to be diagnostic of cancer if they modify a term such as malignancy or carcinoma:

apparent(ly)

appears

compatible with

comparable with

consistent with  

favor(s)

most likely

malignant appearing

most likely

presumed

probable

suspect(ed)

suspicious (for)

typical of

EXCEPTION: If a cytology report says "suspicious," do not interpret it as a diagnosis of cancer. Abstract the case only if a positive biopsy or a physician's clinical impression of cancer supports the cytology.  The diagnosis date is date of supporting documentation - either physician statement or positive biopsy. The date of the suspicious cytology may be used as the date of diagnosis when a definitive diagnosis follows the suspicious cytology for cases beginning 01/01/2022 forward. Do not use ambiguous cytology alone for case ascertainment.

If a term does not appear on the above list, or is not a form of a word on this list, the term is not diagnostic of cancer.  Do not accession the case.  Examples of forms of a word are "favored" rather than "favor(s)" and "appeared to be" rather "appears."  Do not substitute synonyms such as "supposed" for "presumed" or "equal" for "comparable."

Any other ambiguous terminology regarding the diagnosis of a malignancy is not to be interpreted as diagnostic of cancer.  Some examples are:

cannot be ruled out

equivocal

likely

lump

lytic lesion (on x-ray)

mass

neoplasm*

nodule

possible

potentially malignant

questionable

rule out

suggests

tumor*

worrisome

For example, a diagnosis of probable carcinoma of the left lung would be abstracted as a lung primary. A possible carcinoma is not reportable.

*EXCEPTION: For benign and borderline brain and CNS tumors, the terms "tumor" and "neoplasm" will be considered diagnostic of a reportable disease.


2.  Changing the diagnosis

Over time, information may be added to the patient's medical chart that was missing or ambiguous in the original record. It is the practice to accept the thinking and information about the case based on the latest or most complete information. Thus, it is acceptable to change the primary site and histology as information becomes more complete. However, information about the Collaborative Stage and extent of disease at diagnosis may only be changed as long as the new information reflects the time period within four months of the date of diagnosis in the absence of disease progression or through first course surgeries, whichever is longer.

There may be cases reported originally as cancer with the ambiguous terms listed previously, which later information indicates never were malignancies. These cases must be deleted from the file, and the sequence number of any remaining cases for the same person adjusted accordingly.