August 27, 2021
August 2021
Vol 10 Issue 2
From the Editor

I can't believe it's almost the end of summer and now time for the new school year to begin. This has been another roller-coaster of a year and we are only a little more than half way through and yet, in spite of everything going on, we continue to do our work and meet seemingly impossible deadlines and goals. It takes strength and courage to just show up everyday and do the best we can. Thanks for your part in doing that!

We have several articles that I hope inspire you to continue your excellent work. First, in the Data Quality Corner, Nai Robinson, CRGC Auditor, provides tips on how to improve coding Summary Stage based on recent audit findings and Taina Valone, CRGC Data Quality Specialist, shares results of a CRGC data review and includes helpful information on how to correctly code brain surgery. It appears we still have some coding issues with code 55.

Next, Anshu Shrestha, Research Scientist III, describes the challenges faced and the solutions developed by the CRGC Research Unit when collecting tumor specimens for research projects. Dr. Shrestha provides a behind the scenes look at some of the work involved in conducting a large cancer study.

Then Rob McLaughlin, Special Program Advisor to CRGC shares the latest collaborative work he and two cancer registrars (one being California's own Ann Griffin from UCSF) have contributed to the Cancer Registry Management: Principles and Practices for Hospitals and Cancer Registries. This chapter provides important information on the legal and ethical aspects of cancer - something we don't always think about but should.

And finally, I came across a poem that really spoke to me and captured what I feel many of us have been going through lately. I am sharing it with you here because it lifted me up and gave me hope to be able to move forward during these tough times that we are living in. I contacted the poet and asked for his permission to include it, and he graciously granted it, and even thanked us for the work we do. He said he would be honored to have it in our newsletter. I hope you find it as soothing and inspirational as I do.

We hope you find these articles interesting and informative. We appreciate the efforts of each of you in providing accurate, complete and timely cancer data. Thank you!

Stay healthy and safe!

Data Quality Corner

Nai Robinson, CTR, CRGC Auditor

The review of 22 admission and tumor level cases was conducted to assess current Summary Stage 2018 coding. The following is a breakdown of Admission level findings from this review, which was performed in collaboration with the California Cancer Registry.

Data Criteria:
  • 2018-2019 DX year
  • Sites Reviewed: Bladder, Breast, Lung, Colon, and Prostate
  • Directly coded Summary Stage 2018
  • 22 cases

  • Lung: 6 of the 7 Lung cases required recoding to a higher code; 4 cases initially coded 1, 3, or 9 were recoded to 7 for distant disease supported in text. Two cases with Summary Stage code 2 and 3 were recoded to Summary Stage 4 (regional extension plus lymph node involvement) from the documented information. Summary Stage code 4, was often confused with the previous AJCC TNM distant metastasis code 4. The correct Summary Stage for distant metastasis is code 7.
  • Colon: 3 of the 4 cases reviewed with Summary Stage 2 were down coded to Summary Stage 1 based on invasion of pericolorectal tissue in non peritonealized subsite.
  • Breast: 2 Breast cases coded to 9 contained enough information to assign code 1.
  • Prostate: 1 case coded to 3 was recoded to 7 - admission text documented osseous metastasis.
  • Bladder: 1 case was changed from code 9 (unknown) to code 4 - admission text described vaginal involvement with positive lymph nodes.

  • The Summary Stage Coding Manual is your best friend. It is detailed, clear, and easy to understand.
  • Take the time to read the Notes in each Summary Stage Schema. They give clear explanations on the codes and instructions on when to use them.
  • Approach Summary Stage 2018 as its' own unique staging system. The codes and code definitions differ from other staging systems.
  • Review the text in your abstract to ensure it supports the Summary Stage you have assigned to the case.

Summary Stage is perhaps the most important information in your abstract. Don’t pass up the opportunity to ensure accurate Summary Stage information and have your hard work count.

Data Review: Brain Surgery Code 55
Taina Valone, RHIT, CTR, CRGC Quality Control Specialist

The CRGC Data Quality team continues to run data queries as part of our SEER data submission preparation process. One review where we consistently notice over coding is with surgery code 55 (definition=gross total resection of LOBE of brain or lobectomy) for Brain and CNS cases. 

Data Criteria Review
  • 2019 DX year
  • Site Range=C700-C719
  • Surgery Primary Site coded 55
  • 93 Cases met these criteria

Recode Findings
  • 4 cases had lobectomy text that supported code 55 (1 frontal and 3 temporal)
  • 4 cases were spinal cord tumors with gross total resections or resections and are only coded 22
  • 85 cases were recoded to 30 or 21 because the operative and/or pathology reports had text that supported coding the resection of the tumor. A brain lobectomy was not performed.

  • Only use code 55 when there is clear documentation that a lobectomy of the brain was performed. This is most often done when there is a temporal tumor.
  • Benign meningiomas are rarely removed with radical surgery like a brain lobectomy
  • The codes 20-30 are used to describe the resection of the tumor. The nature of the procedure and extent of resection does not qualify for coding a partial or total lobectomy of the brain.
  • Spinal code tumors resections are only coded to 22
  •  Keep documenting the Gross total resection (GTR) of the tumor mentioned in the operative report and/or path report and any helpful operative comments like “completely resected”, “entire tumor removed”.
  • Always review a case with a surgery code of 55. The use of surgery code 55 should be the exception, not the rule for coding brain surgery and a lobectomy should be documented.
  • In short
  • Brain/CNS Surg codes 20-30=Resection of the TUMOR
  • Brain/CNS Surg codes 40 and 55=Partial or total resection of the LOBE OF BRAIN

There is another excellent resource that was published in the April 2021 CHATS, “Brain and CNS Surgery Codes by Crickett Dyke, CTR.

Thank you for all the excellent documentation that helped to recode these cases to more precise codes. We appreciate the time you spend recording these details that make recoding easier.
CRGC's Experience With Collecting Tumor Specimens for Research: Key Challenges and Solutions
Anshu Shrestha, PhD
Research Scientist III, CRGC 

CRGC’s research unit has been collaborating with nine other registries to conduct a large, NCI-funded prostate cancer study in African American (AA) men for the past two years. This ambitious study aims to recruit 10,000 AA men to investigate social and biologic factors that lead to more aggressive disease and increased mortality in this population. In addition to the regular surveillance data collected by the registry, the study includes collection of the following components:

  • Survey – Collection of socio-demographic, family history, and lifetime exposure to various social/racial stressors
  • Saliva sample
  • Tumor tissue

CRGC is responsible for recruiting and collecting surveys and saliva from up to 670 AA men in its catchment area, as well as collecting tumor tissue blocks for consenting participants from facilities (i.e., hospitals and laboratories) where their tissue is stored. This requires identifying relevant facilities and personnel, then sending them tissue requests along with participant lists and copies of signed informed consent and HIPAA release forms. In February 2021, CRGC Research Unit (RU) initiated tissue procurement for the consenting participants.

CHALLENGE: The CRGC catchment area is large, encompassing 48 out of 58 counties in California. This area contains numerous medical care facilities and pathology laboratories with a wide range of policies, procedures, and fee structures for sharing tissue samples. Such heterogeneity in tissue lending policies makes it difficult to keep track of specific requirements for each facility and, at the same time, it requires different negotiation approaches to persuade facilities to share the biospecimens needed for the study.


Development of a Tracking Database:
  • Since we anticipated varied lending policies and fee structures across all facilities that stored tissue for the CRGC’s RESPOND participants, we knew from the start that the database needed to have the following key features:
  •  It is comprehensive in its ability to track all pertinent information on facilities and participants and, at the same time, flexible enough to allow for any updates needed along the way.
  • It can monitor and easily generate weekly progress reports. 
  • It is easy to use and can provide snapshots of most updated information on facilities and participants associated with them to help our staff during follow-up calls.
  • In order to build such a database, we needed reliable information and good planning. Thus, we relied on knowledge we had gained from our prior experience in recruiting facilities and collecting biospecimen samples as well as information shared by some of the registries that had been involved in similar work before.
  • Once the database was built, it was tested by both future users as well as those experienced in tissue requests. Their feedback was used to further fine-tune the database. Once it was in the field, we continued to make some minor changes to our request procedure and to the database in response to new information obtained from other sites, including researchers from Harvard University who shared their tissue request experience during one of our weekly study team meetings.  
Implementation Phase:

We worked to build relationships with facilities by making phone calls prior to sending tissue requests to provide and gather information relevant for tissue procurement. Key information gathered during these calls was recorded in the tracking database, including their policies, fee structures, and any logistical or other concerns raised for review with the study team. We then modified our process to accommodate their needs/concerns whenever possible. 


  • The well thought out procedure and the tracking database allowed for efficiency in generating and sharing tissue requests and all pertinent materials (such as signed informed consent, HIPAA release form) with facilities.
  • We were able to quickly review special requirements for various facilities in a summary list generated from the database and address them in a timely and appropriate manner. Sometimes this required providing further clarification on what we were requesting, for example, assuring the facility that participants’ tissue blocks would be sectioned by a pathologist at Johns Hopkins University and that the remaining tissue would be returned. In some cases, it meant further conversation with the facility leadership  As a result of these efforts, we have been successful in procuring tissue specimens for 43 participants, out of 91 requested (response rate = 47%) within the last three months. Of these, 10 were procured after additional conversation and negotiation with the facilities. The remaining requests are undergoing additional follow up to increase our sample size. CRGC will continue to request tissue specimens from consenting participants for another 12 to 18 months.
  •   When we first started tissue requests, this database allowed us to ramp up the requests to several facilities at a time and helped us with timely follow-ups. As a result, we made significant weekly progress which garnered positive attention from other study sites and even requests from a couple of registries to provide guidance in building their own tracking database.

The facility interactions have strengthened CRGC relationships with facilities. At the same time, they have helped us better understand logistical challenges involved in obtaining tissue samples and come up with appropriate strategies. We continue to regularly review the outcomes of these interactions and to modify our processes when necessary. Careful planning, regular monitoring, and our flexibility in addressing special needs of facilities has resulted in ensuring that we reach our study goal within a given timeframe.
Cancer Registry Management: Principles and Practices for Hospitals and Central Registries
Robert McLaughlin, JD, PhD
CRGC Special Program Advisor
Last month, the latest—now fourth—edition of the practice manual of the National Cancer Registrars Association was released. The new edition reflects a comprehensive effort to make information about the profession of cancer tumor registrars and the technical content of cancer registration more accessible. Robert McLaughlin of CRGC had the opportunity to co-author a new chapter with Ann Griffin (University of California, San Francisco) and Maureen Romero (New Jersey State Cancer Registry) entitled, “Legal and Ethical Aspects of Cancer Registry Data.” The authors were able to blend their experiences with hospital and central registries, and different areas of expertise with a focus on how legal and ethical considerations in cancer registration extend from doctor-patient confidentiality.
As is widely recognized in the cancer registry community, cancer data exist because of public demands that individual cases be counted and understood not only in terms of the experiences of individual patients, but also with respect to patterns and trends, with the systematic compilation of data enabling the population-based study of who gets cancer, why, when, under what circumstances, and with what range of outcomes. The activity of cancer registration depends, however, on an extension of the underlying trust and the legal privilege of confidentiality that exist between a patient and his or her doctors. That privilege exists to support the free and clear communication necessary to the provision of the optimal treatment and care. The confidentiality of the relationship relates to the completeness, accuracy, and timeliness of the information a patient provides. These same qualities are essential to the cancer data on which research, surveillance and cancer control depend.
The chapter uses this perspective to discuss federal laws and regulations, including HIPAA, institutional policies and procedures, duties of care, patient privacy and professional ethics. The authors also contributed a new appendix to the manual, Appendix F, Data Security Terms and Concepts for Cancer Registry Operations.
Print and electronic versions of the new manual are available at:
How To Live With My Body

“my brain and
heart divorced
a decade ago

over who was
to blame about
how big of a mess
I have become

they couldn't be
in the same room
with each other

now my head and heart
share custody of me

I stay with my brain
during the week

and my heart
gets me on weekends

they never speak to one another
- instead, they give me
the same note to pass
to each other every week

and their notes they
send to one another always
says the same thing:

‘This is all your fault’

on Sundays
my heart complains
about how my
head has let me down
in the past

and on Wednesday
my head lists all
of the times my
heart has screwed
things up for me
in the future

they blame each
other for the
state of my life

there's been a lot
of yelling - and crying

lately, I've been
spending a lot of
time with my gut
who serves as my
unofficial therapist

most nights, I sneak out of the
window in my ribcage
and slide down my spine
and collapse on my
gut's plush leather chair
that's always open for me

~ and I just sit sit sit sit
until the sun comes up

last evening,
my gut asked me
if I was having a hard
time being caught
between my heart
and my head

I nodded

I said I didn't know
if I could live with
either of them anymore

‘my heart is always sad about
something that happened yesterday
while my head is always worried
about something that may happen tomorrow,’
I lamented

my gut squeezed my hand

‘I just can't live with
my mistakes of the past
or my anxiety about the future,’
I sighed

my gut smiled and said:

‘in that case,
you should
go stay with your
lungs for a while,’

I was confused
- the look on my face gave it away

‘if you are exhausted about
your heart's obsession with
the fixed past and your mind's focus
on the uncertain future
your lungs are the perfect place for you

there is no yesterday in your lungs
there is no tomorrow there either

there is only now
there is only inhale
there is only exhale
there is only this moment
there is only breath

and in that breath
you can rest while your
heart and head work
their relationship out.’

this morning,
while my brain
was busy reading
tea leaves

and while my
heart was staring
at old photographs

I packed a little
bag and walked
to the door of
my lungs

before I could even knock
she opened the door
with a smile and as
a gust of air embraced me
she said

‘what took you so long?’”
~ john roedel 
If you have questions or concerns regarding any of the content of this CRGC communication please contact me.

Mignon Dryden, CTR
Director, E-Reporting
Cancer Registry of Greater California