SEER Inquiry System - Search

A common scenario is a patient has a positive CT of the abdomen/pelvis for liver mass only. Biopsy of the liver mass is positive for cholangiocarcinoma. The physician is also calling the liver tumor the primary site with histology of cholangiocarcinoma. There is no evidence of intrahepatic bile duct (C221) or gallbladder (C240) involvement which are sites specific to this histology. The hematology/oncology consult stages this as Stage IIIA, T3N0M0 intrahepatic cholangiocarcinoma.  Can we code cholangiocarcinoma with site code C220 (liver) or should we assume that C221 (intrahepatic bile ducts) would be a better code to reflect this histology?  

A January 2022 endometrium biopsy and curettage both show final diagnosis of “mild cytologic atypia and glandular crowding, at most endometrioid intraepithelial neoplasia.”  Any subsequent surgery path is unlikely to provide clarification.

History provided by the oncologist

Right neck mass since 2019; 04/07/20, initial biopsy p16-negative SCC, delay of treatment due to patient preference, agreed to biopsy of tonsil and work-up August 2022; right tonsil biopsy: p16-positive, G2 SCC, nodal mass at that time >6 cm with extensive extranodal extension, Stage III (cT2, cN3, cM0, p16-positive); based on this history, was staged as a tonsil primary and p16-positive.

Patient details

1. March 2020, CT neck and chest revealed a 0.5 x 2.7 x 2.3 cm low-density necrotic nodal mass at right neck level 2 suspicious for metastatic disease.  There was a slight asymmetric increased size of the right palatine tonsil.  There are a few sub-4 mm pulmonary nodules which are nonspecific.

2.  April 7, 2020, FNA of right neck mass with pathology revealed p16-negative SCC   

3.  April 20, 2020, PET/CT revealed 3 x 2 cm right-sided level 2 node with FDG avidity  

4.  May 5, 2020, flexible laryngoscopy showed no obvious primary lesion   

5.  May 2020, after evaluation by a medical oncology, patient declined any treatment  

6.  June 17, 2022, return visit in medical oncology after PET/CT demonstrates significant progression in the neck; patient definitively declines chemo, but would like surgical opinion.  Now has more rapidly progressive disease with skin breakdown and weeping from malignant lesion right neck.  

7.  June 22, 2022, radiation oncology consultation   

8.  July 15, 2022, tonsil biopsy: Invasive squamous cell carcinoma, moderately differentiated with LVI, p16-positive  

9.  Patient now agreeing to treatment with radiation: Tooth extractions 8/30/2022, radiation planning 9/14/2022  

10.  Patient consulted with cancer specialist who explained surgery is not recommended given level of extranodal extension and risk of seventh cranial nerve paralysis and fistula formation with surgical excision and who recommended chemoradiation

11.  September 9, 2022, patient presented for radiation CT simulation/treatment planning and informs treatment team. Patient declined/refuses concurrent chemotherapy despite recommendations from two cancer institutions.

Patient has a diagnosis of myeloid sarcoma presenting as multiple erythematous papules and nodules on back, chest, right arm & shoulder. Oncologist did not mention any evidence or suspicion of an associated AML diagnosis.

HemeRetic schema EOD Primary Tumor Note 1 states that myeloid sarcoma can be coded as localized (code 100) or systemic (code 700). It is not clear what would qualify as systemic disease for myeloid sarcoma.

For example:

-ultrasound of the right eye: consistent with a nevoma/melanoma; we could not find any indication that nevoma is a reportable term

-bladder biopsy pathology report:  severe urothelial dysplasia/carcinoma in situ (CIS)

As a central registry, we receive some limited information cases like this where there is no record of treatment or possibility to follow-back to physicians for clarification, so we want to make sure we are reporting them correctly.

Acinar predominant adenocarcinoma measures at least 12 mm and involves wedge biopsy margins, while the lepidic predominant adenocarcinoma measures 11 mm and does not involve the margins of that separate specimen. Pathologist also notes, “CT findings of diffuse coarse reticular nodular opacity, these findings may represent pneumonic type adenocarcinoma/diffuse pulmonary involvement or intrapulmonary metastasis.  Both of these scenarios have the corresponding stages of pT4 (if thought to be ipsilateral) or M1a (if thought to also involve the contralateral lobe).”

Patient declined any further treatment and transitioned to hospice before expiring less than 1 month after wedge biopsies.

It is unclear if Rule M6 would apply to these two specimens with different subtypes since this scenario is not specifically addressed in the M rule definitions.

Is a physician’s statement of progressive disease adequate to determine disease progression in coding first vs. second course treatment? Can an increase in tumor burden (i.e., a change in overall stage) be used by the registrar to determine disease progression?

Often, determining disease progression is difficult as there are no guidelines in the SEER Manual related to this topic. It seems a physician’s statement of progressive disease should always be accepted. However, that statement is not always available. While it seems an increase in tumor size alone would not be “progressive disease” as tumors will continue to grow, can registrars use an increase in tumor burden to make this determination?

The instructions for coding first vs. second course treatment are clear when a treatment plan is changed, but determining whether there has been disease progression, recurrence, or treatment failure can be difficult without a physician’s assessment.

For example, a patient was diagnosed with a newly diagnosed resectable pancreatic cancer; the documented treatment plan was for upfront chemotherapy, followed by repeat staging, followed by pancreatectomy. The patient completed 3 cycles of FOLFIRINOX, but the physician noted that the CT scan shows progressive disease, and the plan was to start a new treatment regimen with Abraxane, Gemzar, and stereotactic body radiation (SBRT) (Cyberknife). The patient completed the additional chemotherapy, radiation, and proceeded to the initially planned surgery. The pathologist staged this as yp disease, but the surgery appears to be second course treatment, and we would not code the surgery, or collect the staging (yp staging) since the physician stated this was progressive disease. The classification as yp staging can be misleading, since the resection is technically after neoadjuvant treatment, but is not collected per our guidelines. In this case, is it correct to code first course treatment as FOLFIRINOX only?