SEER Inquiry System - Search

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?

11/16/20: Patient diagnosed with endometrial cancer on by MRI of the pelvis; 11.5 cm uterine mass consistent with cancer with no lymphadenopathy.

1/6/21: Patient had a total abdominal hysterectomy/bilateral salpingo-oophorectomy and pelvic lymph node dissection. Operative report stated patient had mildly enlarged bilateral pelvic nodes.

Path report: Endometrioid adenocarcinoma with invasion of the serosa. Five bilateral pelvic nodes were sampled and negative. Originally, staging had patient as node negative.

1/22/21: Patient had post op imaging done that showed metastatic retroperitoneal, aortocaval, and possibly left iliac lymph nodes. Physician changed staging to include the lymph node involvement.

The SEER Manual states that the Other Therapy data item identifies treatments given that cannot be classified as surgery, radiation, systemic therapy, or ancillary treatment; and the instructions for code 2, Other-Experimental, say to assign this for any experimental or newly developed treatment, such as a clinical trial, that differs greatly from proven types of cancer therapy.  Does this mean that only unclassifiable treatments should be coded in Other Therapy, even if given as part of a clinical trial? 

For example, if a patient is given a drug as part of a trial that is categorized in SEER*Rx as immunotherapy, should it be assigned both Immunotherapy (NAACCR #1410) code 1 and Other Therapy code 2, or only coded in Immunotherapy since it is classified as such?  How should a clinical trial drug be coded if it has a treatment classification in SEER*Rx, but the type of cancer being treated is not listed under the Primary Site or Remarks sections as being FDA approved?  A real case scenario is atezolizumab given for colon cancer as part of a trial; this drug's category is Immunotherapy in SEER*Rx but colon is not listed under Primary Sites or in the Remarks detailing FDA approvals.

IMC-A12 (Cixutumumab) is listed as a BRM agent in SEER*Rx, but the Remarks section indicates it should be coded as Other Therapy until there is FDA approval. It is unclear if FDA approval was ever given for this agent. We are mainly seeing it given for prostate primaries.

2016 Total thyroidectomy, Multifocal

-Dominant Tumor:  Right Lobe, Papillary thyroid carcinoma (8260/3)

-Tumors two through five:  Three tumors Papillary thyroid carcinoma (8260/3), and one tumor Papillary thyroid carcinoma, follicular variant (8340/3)

-An additional tumor: Non-invasive follicular thyroid neoplasm with papillary-like nuclear features (8343/2)

Lymphoma case diagnosed in 2021: The patient had first round of systemic therapy as documented in the treatment plan and a post-chemotherapy PET scan that showed residual disease. The patient then had a different combination of systemic therapy and still had some residual disease. The patient was given a third round of different combination of systemic therapy in preparation for stem cell transplant. According to the physician post-stem cell transplant note, the patient achieved complete remission.

Is the first course of therapy the first round of systemic therapy only or is it all the therapy given to achieve remission?  It seems like only the first round of systemic therapy is first course of therapy for both leukemia and lymphoma in the hematopoietic manual. I thought all treatment for all hematopoietic cases was first course until remission achieved or progression was evident.

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.

Example Case 1:  2022 mobile tongue tumor biopsy shows squamous cell carcinoma, basaloid non-keratinizing type.

Example Case 2:  2022 base of tongue mass biopsy shows squamous cell carcinoma, basaloid non-keratinizing type, p16 positive.

Table 5, Note 2 (Head and Neck Equivalent Terms and Definitions) instructs us to code non-keratinizing squamous cell carcinoma which is p16 positive to 8085 (Squamous cell carcinoma HPV-positive), ignoring the non-keratinizing subtype. Does p16 or HPV positivity also take priority over multiple subtypes (basaloid non-keratinizing type)?

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.

2022 case: Surgical Pathology Report-spinal cord tumor, biopsies: ALK-positive neoplasm most consistent with ALK-positive histiocytosis.