ISCR Frequently Asked Questions

Updated January 21, 2016

 

The questions below are commonly asked and answered by ISCR staff.  Questions can also be researched using the standard-setter resources found on the ISCR Home Page,  FAQ section.  A review of this page and the standard-setter resources should answer most questions.  If, after reviewing these various sources, you are unable to find an answer to your question, please email your question to dph.iscrrep@illinois.gov or call 217/785-1873.

 

Questions by Category:

Reportability

Question

Answer
1. If the pathology report states GIST, but does not specify that the tumor is malignant, is it reportable? GIST, NOS is a borderline tumor and is not reportable. GIST is not reportable unless it is identified as being in situ or malignant.
2. Are venous angiomas arising in blood vessels of the CNS sites reportable? Venous angioma is described as a malformation, not a tumor by neurological pathologists and also in WHO.  So therefore is not reportable.
3. Is arteriovenous hemangioma (9123/0) a reportable benign histology for CNS sites? Arteriovenous hemangioma of the CNS is reportable when diagnosed in 2004 or later, and when it arises in the dura or parenchyma of the CNS.  It is not reportable when it arises in a blood vessel.
4. Are schwannomas reportable? Reportability depends on the primary site: When they originate in the intracranial (intradural) or intraspinal space they are reportable.

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Demographics

Question

Answer
1. When recording the address, where do I put the apartment number? The apartment number, unit number, or fractional address should be recorded in the field ADDR AT DX - NO & STREET (e.g., 501 W Cottage Grv Apt 3).  Do not record apartment number, unit number, fractional address, etc. in the field ADDR AT DX - SUPPLEMENTL. 
2.  If someone has two last  names, how should I report their name? If possible, ISCR prefers that the last name be hyphenated (e.g. Smith-Jones).  This helps us when matching records.

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Tumor Description

Question

Answer
1. I noticed the FORDS manual has changed their coding instructions for grade.  Has ISCR also changed their coding instructions for grade? ISCR has not changed its coding instructions for the grade field.  

After receiving clarification from the National Program of Cancer Registries (NPCR), ISCR has decided that it will continue to require Grade/Differentiation.  The use of the conversion tables to code Grade/Differentiation will continue to be supported by CDC and SEER (see the SEER Program Coding and Staging Manual).  Grade Path Value and Grade Path System or Collaborative Stage Site Specific Factors for specific grades will continue to be collected as outlined in the ISCR Manual.
2. How do I assign the primary site if I only know the distance from the anal verge for a colorectal primary? When coding colorectal primaries, if a specific colon subsite is not stated in the endoscopic report, use the following link to assign the correct subsite based on the distance from the anal verge.  http://training.seer.cancer.gov/colorectal/anatomy/figure/figure1.html 
3. When a patient has neoadjuvant therapy, should grade be recorded from the original pathology report of the primary site (prior to neoadjuvant therapy) or from the resection (after neoadjuvant therapy)?
  • When there are two or more pathology reports, code grade from the pathology report prior to neoadjuvant therapy
  • When there is only one pathology report
    • Code the grade from the pathology report prior to neoadjuvant therapy
    • Code 9 (grade unknown)
      • When the pathology is after neoadjuvant therapy OR
      • It is unknown whether the pathology is before or after neoadjuvant therapy
4. For unknown primaries, what is the correct code for grade? For unknown primaries, assign a code 9 for grade.
5. Do we use the date of a suspicious cytology as the date of diagnosis? No, do not use the date of suspicious cytology as the date of diagnosis. 

If cytology is identified only with an ambiguous term, 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 cytologic findings.
6. Can you please clarify how to code diagnostic confirmation for hematopoietic and lymphoid neoplasms when immunophenotyping, genetics, etc. confirm the diagnosis. Assign code 3 for cases positive for neoplasm being abstracted (including acceptable ambiguous terminology and provisional diagnosis) AND immunophenotyping, genetic testing, or JAK2 is listed in the Heme DB and
  • confirms the neoplasm OR
  • identifies a more specific histology (not preceded by ambiguous terminology)

Do not use code 3 for positive immunophenotyping or genetic testing identifying a more specific histology when preceded by ambiguous terminology or when the test result is preceded by "patchy weak staining."

7. What is the correct primary site code for a case deemed to be a head and neck primary but a specific site could not be identified?   Assign C14.8 based on the note in ICD-O-3 indicating it should be used when a code between C00.0 and C14.2 cannot be assigned.  C14.8 is a more specific site code than C76.0. 
8.  I have already submitted a record on  a case as an unknown primary.  Now, one year after diagnosis, the treating physicians have decided the patient has a lung primary.  How do I notify ISCR of the change in primary site? Any requests to change records previously submitted to ISCR (e.g. primary site, staging, treatment, etc.) must be submitted electronically through the IDPH Web Portal ( www.idphnet.illinois.gov)  using the change/delete form.  When you log on the Web Portal, there is a link to the ISCR Change/Delete Form under Applications.

Do not resubmit the case with changes unless instructed to do so by ISCR staff.  Our software will not load the resubmitted case and we will not know that you tried to send us a change.
9.  How is histology coded for a melanoma in situ, lentiginous type, arising in the skin of the lower leg?   For cases diagnosed 2007 or later:

Assign 8742/2 [lentigo maligna] to "melanoma in situ, lentiginous type."  Acral lentiginous melanoma is not the same as melanoma, lentiginous type.  "Acral lentiginous melanoma," 8744, should be used only if the report states acral lentiginous melanoma or malignant melanoma, acral lentiginous type.

Acral lentiginous melanoma most often occurs on the soles of the feet or the palms of the hands.

 
10.  What histology code should I use for an ovarian primary with papillary serous cystadenocarcinoma?  Should I assign the mixed code 8323/3 or 8460/3?  Assign 8460/3 for papillary serous cystadenocarcinoma.  The ICD-O-3 Manual should always be checked to make sure there is not a specific code before using a mixed histology code. 

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Multiple Primaries

Question

Answer
1. A patient had a thyroidectomy which showed a 1cm Hurthle cell carcinoma.  There was also an incidental finding of a 1mm papillary microcarcinoma in the same specimen.  Would this be two separate primaries - Hurthle cell carcinoma (8290/3) and papillary microcarcinoma (8260/3)? No, the patient has one thyroid primary.  SEER has clarified that Hurthle cell is a synonym for follicular carcinoma according to the WHO.  So you really have follicular and papillary (adeno)carcinoma and that is coded 8340/3 per Other Rules M6 and H15.
2.   How many primaries should be accessioned for the case described below?

1/28/08 Patient was diagnosed with spindle cell sarcoma in the right gluteus muscle. Metastatic tumors were found in a vertebral body and in the lung. Chemotherapy was started.

4/22/08 PET scan done to evaluate response to chemo. The primary tumor had increased in size. New mass in the left thigh that was highly suspicious for metastasis found. (The left thigh tumor was not accessioned at that time as it was described as a metastatic tumor.)

7/3/09 Left thigh tumor was resected and path revealed spindle cell sarcoma. There was no mention that it represented metastasis.

Does the left thigh tumor represent a new primary per rule M12? Or does the previous clinical description of the left thigh tumor representing metastasis have priority?

 This is a single primary per Rule M1. According to our expert pathologist, "if multiple solid tissue tumors are present (sarcomas), then almost always there is one primary and the rest are metastases. There are infrequent occasions of multifocal liposarcoma or osteosarcoma occurring, but the patient would be treated as a patient with metastatic disease." Follow these steps:

Step 1: Open the Multiple Primary and Histology Coding Rules manual. For a soft tissue primary, use one of the three formats (i.e., flowchart, matrix or text) under the Other Sites MP rules to determine the number of primaries because soft tissue primaries do not have site specific rules.

Step 2: Go to the UNKNOWN IF SINGLE OR MULTIPLE TUMORS module, Rule M1.

Step 3: Stop at Rule M1. Rule M1 states, "It is not possible to determine if there is a single tumor or multiple tumors, opt for a single tumor and abstract a single primary." Given the information from the expert pathologist, this case should be reported as a single primary applying this rule.

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Staging

Question

Answer
1. A patient has a tumor size from an x-ray (8cm).  After neo-adjuvant treatment, the tumor size on resection is actually bigger (10cm).  How do you code the CS Tumor Size and CS Tumor Size/Ext Eval fields? The standard coding instructions are to code the larger size (10 cm).  The evaluation field would be a 6.  See the CS Manual Part 1 - Section 1: General Instructions, Coding Instructions for Collaborative Stage Data Elements.
2. For CNS primaries, is WHO grade reported in both grade and SSF1? Do not code the WHO grade in the grade field.  The WHO grade for CNS primaries should only be reported in SSF1.

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Treatment

Question

Answer
1. What code for scope of lymph node surgery would be used if positive axillary lymph nodes were removed by sentinel lymph node biopsy? If the axillary nodes are positive on sentinel node biopsy and an axillary node dissection was not done, then the code for scope of regional lymph node surgery would be 2.  If an axillary node dissection was also performed, either at the same time or at a different time, assign the appropriate combination code 6 or 7. 
2. Does brain surgery code 22 apply to excisions of tumors arising in cranial nerves?  For example, if a vestibular schwannoma is excised, what surgery code should be used? Vestibular schwannoma (acoustic neuroma) arises from the VIII cranial nerve (C72.4).  The surgical code for a tumor that originates in a cranial nerve is 22.  If part of the brain is also resected during the surgery, code it in the Rx Summ -- Surg Oth Reg/Dis field.
3. If a patient only has a FNA of two subcarinal lymph nodes to diagnose lung cancer, how would you code the Rx Summ-Scope Reg Ln Sur field? Assign a code 1 (biopsy or aspiration of regional lymph nodes).  Do NOT code this in the field Rx Summ-Dx/Stg Proc. 
4. How do you code excision of a single lymph node for lymphoma primaries?  The coding depends upon how many nodes were involved with lymphoma.
  • If only one node is involved (clinical assessment), an excision of that node is coded 25 [Local tumor excision, NOS; Less than a full chain, includes an excisional biopsy of a single lymph node.] in Surgery of Primary Site.
  • If more than one node is involved, code an excision of a single lymph node in the field Surgical Diagnostic and Staging Procedure
5. How to code tumor embolization.
  • Code as chemotherapy when patient has chemoembolization. Definition of chemoembolization: A procedure in which the blood supply to the tumor is blocked surgically or mechanically and anticancer drugs are administered directly into the tumor. This permits a higher concentration of drug to be in contact with the tumor for a longer period of time.
  • Code as radiation therapy when patient has radioembolization (code under RXSumm for SEER; code as brachytherapy for CoC in Rad-Regional RX Modality). Definition of radioembolization: Embolization by injecting small radioactive beads or coils into a blood vessel feeding the tumor.
  • Code as other therapy (code 1) when patient has tumor embolization with alcohol. Definition of tumor embolization: The intentional blockage of an artery or vein to stop the flow of blood through the desired vessel.
  • Code as other therapy (code 1) when the only information is that the patient had tumor embolization.
6. Does the number of nodes removed affect whether you would code a simple mastectomy or a modified radical mastectomy? For example, if the patient had only a sentinel node biopsy, would the procedure be coded as a simple mastectomy or a modified radical mastectomy? Code a simple mastectomy when sentinel nodes are the only nodes removed. For all other procedures that remove lymph nodes code a modified radical mastectomy. There is no specific number of nodes removed that equals a lymph node dissection.
7. Breast reconstruction may be delayed for valid reasons (e.g., pt too thin at surgery). Should delayed reconstruction be coded in the field “Surgery of Primary Site?” If the reconstruction is included in the treatment plan, it is first course of treatment.
When a tissue expander is inserted at the time of surgery, code reconstruction.
8. Suggest adding one or more new codes for subcutaneous mastectomy because it is being used increasingly for breast cancer patients, and it is used specifically in conjunction with immediate reconstruction (to take advantage of sparing the skin). The current instructions identify the procedure as "rarely used for malignancies", and the current code structure does not allow for recording reconstruction. The code for subcutaneous mastectomy is 30, and the other codes in the 30s range are not in use for breast. The note “rarely used” was removed. FORDS revised for 2011 states “Cases coded 30 may be considered to have undergone breast reconstruction.”
9.  Is Rituximab coded as chemotherapy or BRM?  The correct code depends on the patient's date of diagnosis.

In January 2013, SEER updated SEER*Rx and the drugs listed in the table below changed categories from Chemotherapy to BRM/Immunotherapy.   This change is effective with diagnosis date January 1, 2013 forward. For cases diagnosed prior to January 1, 2013 continue coding these six drugs as chemotherapy.  For more details or to download  the latest SEER*Rx software go to http://seer.cancer.gov/tools/seerrx/index.html .

 

Drug Name(s) Previous Category New Category Effective Date
 Alemtuzumab/Campath  Chemotherapy  BRM/Immuno  1/1/2013
 Bevacizumab/Avastin  Chemotherapy  BRM/Immuno  1/1/2013
 Rituximab  Chemotherapy  BRM/Immuno  1/1/2013
 Trastuzumab/Herceptin  Chemotherapy  BRM/Immuno  1/1/2013
 Pertuzumab/Perjeta  Chemotherapy  BRM/Immuno  1/1/2013
 Cetuximab/Erbitux  Chemotherapy  BRM/Immuno  1/1/2013

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Edits

Question

Answer
1. I have an edit on the Date 1st Crs Rx CoC Flg.  I do not know if the patient had any treatment.  How should I code the fields Date 1st Crs Rx CoC and Date 1st Crs Rx Coc Flag if I do not know if the patient had any treatment? Date 1st Crs Rx CoC should be coded with either the date treatment started or the date a decision was made not to treat by the physician or by the patient or by someone on behalf of the patient.  For active surveillance cases, the date of that decision should be coded.

The coding instructions for Date 1st Crs Rx CoC Flg are summarized below.

  • Leave the Date 1st Crs Rx CoC Flg blank if Date 1st Crs Rx CoC has a complete or partial date.
  • Assign code 10 if you do not know if any treatment was given.
  • Assign code 11 if the patient was initially diagnosed at autopsy.
  • Assign code 12 if you know the patient received first course of therapy or a decision to use active surveillance was made, but you do not know the date.

See the ISCR Reporting Manual for more detailed coding instructions.

2.  A patient was diagnosed with a lung primary based on a positive FNA of a supraclavicular lymph node on 2/3/15.  The patient has had no surgery or other treatment for this cancer.  I have code 1 in Rx Summ-Scope Reg Ln Sx, but I am getting an edit.  Should I code the FNA of the supraclavicular lymph node in the diagnostic and staging procedure instead? Do not code surgical procedures which aspirate, biopsy, or remove regional lymph nodes in an effort to diagnose and/or stage disease in Rx Summ-Dx/Stg Proc.  Use the data item Rx Summ-Scope Reg Ln Surg to code these procedures.

For the case you have described you should assign the following codes:

Field Code
 Rx Summ-Dx/Stg Proc 00
 Rx Date Dx/Stg Proc blank
 Rx Date Dx/Stg Proc Flag 11
 Rx Summ-Surg Prim Site 00
 Rx Date Surgery 20150203
 Rx Date Surgery Flag blank
 Rx Summ-Scope Reg Ln Sur 1
 Regional Lymph Nodes Positive 95
 Regional Lymph Nodes Examined 95
 Date 1st Crs Rx CoC 20150203
 Date 1st Crs Rx CoC Flag blank

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Technical

Question

Answer
1.  How do I sign up for a Web Portal account? To sign up for a web portal account, go to www.idphnet.illinois.gov and click on the "Register for a Portal Account" link on the right-hand side of the screen. 

Notes on completing the request form: 

  • Purpose for registration:  In the  purpose of registration box, please put "cancer registry rights".  Be sure to also include your facility ID number and name. 
  • Please check the appropriate box(es) below to request access to restricted applications:  All hospitals, ambulatory offices, and radiation therapy centers must put a check mark in both Cancer Registry System and MoveIt File Transfer.  Physician and dermatology offices only need to put a check mark in Cancer Registry System.
  • PRA E-mail:  If you are reporting for a hospital, you will need to select the PRA person from your hospital.  If you are reporting for an ambulatory office, dermatology office, or radiation therapy center, please select Larry Hebert IDPH.
  • When you have completed the application, please send an email to dph.iscrrep@illinois.gov and ISCR can track how quickly the account is set up.
2.  My Web Portal password has expired.  Who do I call to reset the password? Please call our Help Desk at 1-800-366-8768, option 1, option 1. 
3.  When I sign into the Web Portal and choose "Application", there is nothing there. If this happens, you are not logging into the newest Web Portal link.  Please check your link.  The correct link is www.idphnet.illinois.gov. 
4.  I'm signing into the Web Portal for the first time, what do I mark on the authentication page? You will put a dot in PRIVATE computer. Under DOMAIN, select DPH employee.  Then, enter your user name and password.
5.  How do I download a file from MoveIt? Click on the file name and the screen will show delete/download. Click on download and then click on save.  

A screen will pop up asking for a destination to save the file.  In the top line you will choose where you want to save this document (ex. MyDocument, specific drive, etc.).  

You will need to add a file extension to the name of the document before you download it.  In the save file line you will click once and  the line will turn blue.  Click again and the line turns white; you can now edit the line. 

  • If you want to open the document in Microsoft Word, at the end of the file name put .doc and then click save and then open. The document will then open in Microsoft Word.  
  • If you want the document to open in Adobe, you will need to put .pdf at the end to open the document in Adobe.  
  • If you want to document to open in Excel, you will need to put .xls at the end to open the document in Excel.

Once you print the document, you can then delete the file from your computer. MoveIt automatically deletes the file from their system.
6.  A staff member has left my hospital.  How do I notify ISCR of our staffing change? Please send an email to dph.iscrrep@illinois.gov.  

When a person leaves a facility, it is very important to notify ISCR immediately.  If this person has a WebPortal account they will continue to have access to confidential information unless ISCR is notified to disable and delete the account. 

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