Directly Coded Summary Stage Nicole Catlett, CTR Kentucky Cancer Registry Spring Training April 2015

Objectives What is Staging? What is Summary Staging? How do I assign Summary Stage? What are the Summary Staging Groups? Important Points

What is Staging? A method of grouping cancer cases by primary site to determine how far the cancer has spread at the time of diagnosis.

Two Primary Systems

What is Summary Staging? “SEER Summary Stage 2000 is the most basic way of categorizing how far a cancer has spread from its point of origin.” Young JL Jr, Roffers SD, Ries LAG, Fritz AG, Hurlbut AA (eds). SEER Summary Staging Manual - 2000: Codes and Coding Instructions, National Cancer Institute, NIH Pub. No. 01-4969, Bethesda, MD, 2001. This presentation is based on information from the SEER Summary Stage 2000 manual or SS 2000.

What is Summary Staging? “Summary staging uses all information available in the medical record: in other words, it is a combination of the most precise clinical and pathologic documentation of the extent of disease.” Young JL Jr, Roffers SD, Ries LAG, Fritz AG, Hurlbut AA (eds). SEER Summary Staging Manual - 2000: Codes and Coding Instructions, National Cancer Institute, NIH Pub. No. 01-4969, Bethesda, MD, 2001. SS uses a combination of precise clinical and pathologic documentation of the extent of disease. Gross observations at surgery, or what the surgeon “sees” are particularly important when all malignant tissue is not removed. Important….. In the event of a discrepancy between pathology and operative reports concerning excised tissue, priority is given to the path report. If the operative/pathology information disproves the clinical information, code the operative/pathology information.

Summary Stage Background SS77 - Diagnosed prior to 2001 SS2000 - Diagnosed from 1/1/2001 Collaborative Staging - Diagnosed from 1/1/2004 SS 2000 Directly Coded - Diagnosed 1/1/2015 From 1/1/2004 Summary Stage was a derived data item from the Collaborative Staging System. As of 1/1/2015 directly coded summary stage is required. Your data from 1/1/2001 to date should be comparable using SS 2000. * Currently Summary Stage is being derived by Collaborative Staging *

What is Summary Staging? General categories of in situ, local, regional and distant Codes range from 0 – 9 Combines best clinical and pathological documentation Applies to all sites and histologies (unless otherwise noted) Used by central cancer registries Different than AJCC and May not be understood by physicians, remember SS is a basic way of categorizing how far a cancer has spread from its point of origin. It consists of general categories that combine clinical and pathological documentation and it is required by CDC’s NPCR central cancer registries.

How Cancer Spreads Local invasion By direct extension Via Lymphatic system Via blood-borne metastases Intracavity metastatic seeding

Answers four basic questions about the extent Summary Stage Answers four basic questions about the extent Where did the cancer start? Where did the cancer go? How did the cancer get to the other organ or structure? Continuous line of cancer cells from the primary site? Probably direct extension Cancer cells break away from primary cancer and traveled through blood stream or body fluids? Probably distant What are the stage and correct code for this cancer? So what does SS tell us……..

Features of Summary Stage List of Ambiguous Terms for determining involvement Site specific chapters (by ICD-O-3 primary site) - Regional tissues and nodes are listed for each site - Additional information such as definitions, diagrams and notes Site specific rules (relatively few) - Hematopoietic diseases are always distant (code 7) - Lymphoma and Kaposi sarcoma have histology specific schemes any mention of lymph nodes is indicative of involvement only codes 1, 5 and 7 apply Unknown primary site is always unknown stage (code 9) Assign the highest applicable code Same as AJCC Just like AJCC there are some rules that must be applied for specific sites. For the most part, all rules apply to all sites. But there are a relatively few number of site specific rules. These are not located with the site specific chapter but in the beginning in the general instructions. Won’t read all to you, but as you can see, there should appear familiar to you.

Ambiguous Terminology for Involvement SOME OF THE TERMS THAT CAN BE USED: - Compatible with - Consistent with - Features of - Most likely - Probable - Presumed - Suspected - Suspicious SOME OF THE TERMS NOT TO BE USED: - abuts - approaching - attached - encased/encasing - equivocal - possible - questionable - worrisome A complete list can be found on page 15 in the ‘Introduction to Summary Staging’ section of SEER Summary Staging 2000 Manual. Available on SEER website: (seer.cancer.gov)

Timing Rule All information through completion of surgery (ies) (first course of treatment) or within four months of diagnosis in the absence of disease progression or whichever is longer

Timing Rule Stage may be determined after treatment with radiation, chemotherapy, hormones, or immunotherapy IF You follow the 4-month rule and do not stage after disease progression

Would you include all of this information to determine stage? Timing Rule Example 2/10 Prostate biopsy c/w Adenocarcinoma grade 3 3/01 Bone scan – negative 3/15 Radiation to prostate 7/01 Patient complaining of hip pain 7/04 Bone scan: metastatic disease from prostate cancer Would you include all of this information to determine stage? Explain why you would not include the bone scan on 7/04. The first bone scan was negative, the one on 7/04 was progression.

Where do I start? Where did the cancer start? The correct primary site or The correct histology What is the stage? How far has the cancer spread? Always determine the primary site first (except for lymphomas)

Where do I look? Pathology Reports Cytology Reports Bone Marrow Biopsies Autopsy Reports History and Physical Admitting Notes Discharge Summary Consultative Reports

KEEP LOOKING! X-rays and imaging studies Scopes and manipulative procedures Laboratory reports Operative reports  Treatment Physician’s office records/letters Cancer Conferences Physician Advisor Treatment: many times the treatment will help with stage If a patient is having radiation to bone mets, they cannot have Localized disease. Ask questions if you don’t understand the staging. Your physicians will help

Summary Stage Groups Stage Groups 0 In situ 1 Local 2 Regional by Direct Extension 3 Regional Lymph Nodes only involved 4 Regional by both Direct Extension and to Regional Lymph Nodes 5 Regional, NOS 7 Distant Site and/or Distant Lymph Nodes 9 Unknown or Not Applicable An initial step in determining the summary stage is by a process of elimination. If there is only insitu tumor, then it is a summary stage 0 and you are done! If there is any evidence of invasion, then it cannot be in situ. You have ruled out code 0. If there is any evidence of distant mets, then it is a summary stage 7 and you are done. No need to try to figure out any of the details for local and regional. Sarcomas can never be in – situ because no basement membrane If cancer is anything besides a carcinoma or a melanoma it cannot be in situ In Situ in place has not invaded supporting structure, no penetration of the basement membrane— Local means that it is confined to the organ of origin. It has not spread to regional or distant sites or nodes. Within regional, there are a couple of options. The tumor could have spread just to the regional tissues by direct extension. Or to the regional nodes. Or to both.

Summary Stage Groups Code 8 Benign & Borderline CNS Not applicable Added in 2003 Never use for malignant tumors Not in the SS Manual but a Code 8 was added in 2003 for non malignant (benign or borderline) tumors of the CNS----This code is never used to stage malignant tumors.

IN SITU = Stage 0 Only determined by a pathologist No invasion of the basement membrane No evidence of invasion, extension, or nodal involvement Carcinoma and Melanoma only No foci of invasion No microinvasion

IN SITU Be careful when reading pathology reports 1. Large in situ carcinoma of the breast with 3 of 15 axillary nodes positive for cancer 2. Final Diagnosis: Carcinoma in situ with a foci of microinvasion on the lateral margin Answers: No, even if the pathologist states in situ, if the patient has positive nodes, cannot be insitu ca 2. There cannot be even a foci of invasion for it to be and insitu ca Would you stage these in situ? 1.______________ 2.______________

LOCALIZED = Stage 1 Rule out in situ – is there invasion? Rule out any nodal involvement Rule out extension to regional organ(s) or tissues Rule out distant disease Cancer must be confined to the organ of origin

Does not change the stage LOCALIZED If still within the organ of origin Blood vessel invasion Perineural lymphatic invasion Vascular invasion Multiple tumors, same cell type Metastases within the organ of origin Multifocal Again, localized means within the organ of origin, if you see any of the three types of documentation, it is still a local stage. Example, infiltrating multi-focal breast carcinoma in the right breast, right breast with multiple areas or metastases of infiltrating breast carcinoma.. Does not change the stage Potential for spread

REGIONAL DISEASE Subdivided into Stages 2-5 Stage 2 - Regional By Direct Extension Stage 3 - Invasion of Regional Lymph Nodes (first drainage area) Stage 4 – Both Extension & Nodes Stage 5 - Regional NOS The “regional stage” is perhaps the most difficult, you can pretty well “rule out” the other categories but this one takes more thought and investigation

REGIONAL, NOS = Stage 5 Insufficient workup or information Patient did not continue with workup Clinical diagnosis only Colon, without surgery and pathology you could not really know how far the Cancer spread, but scans may show it is still regional nos

Here is a sample of a page out of the SS2000 manual Here is a sample of a page out of the SS2000 manual. This is codes 2 and 3 for breast.

Site Specific Lymph Nodes Regional Lymph Nodes Distant Lymph Nodes Not listed as regional or distant - Synonymous with a listed node - Non Synonymous, assume distant Each site specific chapter in SS lists the Regional Lymph nodes and the Distant Lymph Nodes for that site. It’s important to look up the specific chain of lymph nodes named in the medical record and if that name is not listed in the specific chapter, determine if it is a synonym, if yes, assign accordingly (regional or distant). If it is not synonymous with a listed node, assume that it is involvement of distant lymph nodes and assign as distant stage. List the involved nodes in the text. If a physician refers to “local” nodal involvement, it is still regional nodes and would be staged accordingly.

SOLID TUMORS Palpable, visible, swelling, or shotty lymph nodes are not considered involved Enlarged and lymphadenopathy should be ignored EXCEPT for lung Matted lymph nodes, or for example, “mass in the mediastinum” are considered involvement Be sure you are not over staging by including mention of nodes such as palpable But read the scans especially for lymphoma and lung

Lymph Node Involvement TUMOR INVOLVED NO INVOLVEMENT SOLID TUMORS Fixed, matted mass in the mediastinum, Retro peritoneum and/or mesentery ANY TUMOR Palpable, visible, swelling, shotty (without clinical or path statement) LUNG Enlarged, lymphadenopathy ANY TUMOR (except lung) LYMPHOMAS Any mention of lymph nodes Here’s the same information in a table that may make it easier for people to understand and retain…….

Lymph Nodes Inaccessible Bladder Kidney Prostate Esophagus Stomach Lung Liver Ovary Corpus Uteri Regional lymph nodes are not palpable for inaccessible sites and the best description concerning regional lymph nodes will be the surgeon’s evaluation at the time of exploratory surgery or definitive surgery.

DISTANT = Stage 7 Systemic disease: diffuse; advanced Spread: to distant organs or tissues to distant nodes seeding in a body cavity peritoneal cavity or pleural cavity Systemic cancers such as the leukemias are always stage 7 or distant

UNKNOWN = Stage 9 Insufficient information to stage Patient expired before workup Patient refused workup Limited workup due to age, or comorbid conditions

UNKNOWN = Stage 9 Document in the text why unknown stage CONTACT THE MANAGING PHYSICIAN CHECK ALL INFORMATION CAREFULLY ASSIGN UNKNOWN STAGE SPARINGLY Always try to stage the case, ask physicians when possible; was the patient discussed at cancer conferences? Document in the text why unknown stage

UNKNOWN PRIMARY SITE (C80.9) REMEMBER UNKNOWN PRIMARY SITE (C80.9) ALWAYS UNKNOWN STAGE LEUKEMIA ALWAYS DISTANT MULTIPLE MYELOMA

IMPORTANT POINTS Read first section carefully Schemas organized by primary site codes - Except for those based on histology - Example: Kaposi Sarcoma (pg 274) ALL sites (or histologies) have a staging schema Helpful anatomy illustrations

IMPORTANT POINTS All malignant tissue is not removed - Include information from gross observation Disagreement concerning excised tissue - Pathology report has precedence over operative report Operative/pathology disproves clinical information - Operative/pathology has precedence over clinical information SS includes clinical information as well as pathologic so it is important to, Remember, to include what the surgeon sees during surgery when all malignant tissue is not removed-----those colon cancers with liver mets. If there is a discrepancy between the pathology report and the operative report concerning the excised tissue, priority is given to the pathology report. Clinical information, such as description of skin involvement for breast cancer and distant lymph nodes for any site, can change the stage. Be sure to review the clinical information carefully to assure accurate summary stage. In the event that the operative/pathologic information disproves the clinical information, code the operative/pathologic information.

ACKNOWLEDGMENTS Centers for Disease Control and Prevention SEER Training Website Parts of a CDC presentation & SEER’s Training website were used to compile this training presentation.

Contact Info Nicole Catlett, CTR Senior Regional Coordinator – Central KY Kentucky Cancer Registry nicole@kcr.uky.edu

QUESTIONS ?

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