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Happy National Cancer Registrar Week, April 8-12, 2024, from our registry to yours!

We are cancer registrars. Do you ever wonder how cancer statistics are collected? How do doctors determine what cancer treatments are the most effective? Or how public health officials learn where clusters of cancer diagnoses are located? The work that we do as cancer registrars provides answers to these questions. Cancer registrars are data information specialists who capture a complete history, diagnosis, treatment, and health status for every cancer patient in the U.S. This curated data provides essential information to researchers, healthcare providers, and public health officials to better monitor and advance cancer treatments, conduct research, and improve cancer prevention and screening programs. We work within hospitals, state, and federal cancer registries, and the information we collect is reported, by law, to state and federal government agencies, including the Centers for Disease Control and Prevention and the National Cancer Institute. As cancer registrars, we have achieved the highest standard of professional excellence by earning the Oncology Data Specialist or ODS credential. We are active members of the National Cancer Registrars Association. NCRA is a non-profit organization that represents over 7,000 cancer registry professionals and administers the ODS credential. The mission of NCRA is to empower and advance registry professionals through innovations in education, advocacy, credentialing, and strategic partnerships.


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In recognition of April’s Head and Neck, Esophagus, Testicular Awareness Month, along with our continuing effort to help shine a light on the benefits of cancer registries, we will examine some of the staging criteria used to determine primary site and prognostic stage groups.

Human Papillomavirus (HPV) and Epstein-Barr Virus have emerged as significant factors in determining the correct primary site of occult Head and Neck cancers. Determining primary site using the solid tumor rules is more complex for head and neck sites due to the number of primary sites, sub-sites, and the sites/organs can be small and close to each other. The complexity of Head and Neck cancers is such that the first 12 site-specific chapters in the AJCC Cancer Staging Manual cover the head and neck and esophageal sites.

Staging can be further complicated when confronted with an occult tumor. There is guidance on how to determine primary site when there is conflicting information with occult tumors of head and neck – using HPV (p16) and EBV status to determine primary site in the following way:

p16 POSITIVE C11.9 Nasopharynx C10.9 Oropharynx C10.9 Oropharynx
p16 NEGATIVE C11.9 Nasopharynx C76.0 Ill Defined Site of Head and Neck C76.0 Ill Defined Site of Head and Neck
p16 UNKNOWN C11.9 Nasopharynx C76.0 Ill Defined Site of Head and Neck C76.0 Ill Defined Site of Head and Neck

In the above table: pos EBV (regardless of HPV status) = C11.9 nasopharynx, pos HPV = C10.9 oropharynx, neg/unknown HPV and EBV = C76.0 ill-defined sites of head and neck (C76.0), does not apply to HPV-mediated (p16+) oropharyngeal cancers (chapter 10)


Generally, there are two descriptive systems for determining the location of a primary tumor within the esophagus. One system is by torso anatomic location: Cervical, Upper thoracic, Mid thoracic, Lower (abdominal) thoracic. The second system is based on relative position within the esophagus itself: Upper (proximal) third, Middle third, Lower (distal) third. Both systems can be correlated based upon the measurement of the distance of the tumor from the incisors.

AJCC Prognostic staging of esophageal cancers can be additionally classified based upon the administration of neoadjuvant treatment (treatment prior to surgery) and histology grouping (Squamous cell carcinoma versus Adenocarcinoma).

In head & neck and esophageal primary sites, the stage 4 prognostic group is not only determined by the presence of distant metastasis like most other sites. A T4 category and/or positive N category can be assigned stage 4 with or without distant metastasis.

Staging of testicular cancers involves AJCC T, N and M categories (similarly to Head & Neck and Esophageal primary sites) but are commonly only staged pathologically due to evaluation and diagnosis at the time of orchiectomy. However, testicular cancers do involve pre-surgical and post-surgical (orchiectomy) serum tumor markers (S) which registrars record in site specific data items (SSDIs): AFP, hCG, LDH, as these are prognostic factors required for stage grouping.

The inclusion of serum tumor markers allows testicular cancers to be staged even if the T category is unknown, but the N and M categories are known. There is no stage 4 prognostic group for the testes primary site and generally the default primary sub-site is “descended testis”, unless the patient is described as a child, prepubescent, or having undescended testes.

Having primary site, staging, and prognostic factors documented in the chart is vital for ODSs to abstract a patient’s case accurately and completely. If clinical and pathological staging criteria have not been documented in the medical record, the ODS is responsible for staging the cancer based on the information available in the chart.