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What the Heck is a Cancer Registrar

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1 What the Heck is a Cancer Registrar
Has anyone ever asked you what you do. And, when you reply, they either nod their head or ask what the heck is that That is not an unusual response when I tell someone that I’m a cancer registrar What the Heck is a Cancer Registrar Berna Glassman, CTR WY Cancer Surveillance Program

2 Introduction Concept of describing disease by stage or extent introduced in 1929 by League of Nations’ World Health Organization First primary site so described was the cervix Staging=shorthand method for grouping cases into broad categories based on disease extent Primary tumor site, tumor size, number of tumors, depth of tumor invasion, involvement of lymph nodes and/or spread to distant sites (distant metastases) Indicates type of treatments to use & prognosis The concept of describing disease is close to 100 yrs old; thus, not a new concept. What have been become increasingly sophisticated are by many by which we are able to describe extent of disease-electron microsocpy, imaging technology, laparoscopic surgery

3 What Is Cancer Registry?
Systematic collection about occurrence of cancer Type of cancer Extent of disease at time of diagnosis Treatments Outcomes of treatment Quality of Medical care Where do we begin? Casefinding Coding into into specialized database Ultimate Goal Prevent and control of Cancer!!! Systematic is a KEY word----there are rules by which we collect data and, in turn, enter it into a specialized cancer database. Uniformity in coding is very important allowing for data analysis locally, nationally and internationally. WCSP motto: inspect, monitor, prevent

4 How It All Works From bottom to top, the hospitals, clinics, laboratories, stand alone treatment facilities are required by law to submit cases of any patient diagnosed and/or treated for cancer at their facilities. These cases are sent to the Central Cancer Registry for processing, especially quality assurance. After editing and processing these cases, the state registry submits their data to 2 national organizations. Often this data is further analyzed and used for international studies.

5 Now, What the Heck is a Cancer Registrar?
Medical Healthcare Professional Medical Coder Cancer-Registry Software Expert Public Relations Person Educator Detective STUDENT!

6 Why Would Anyone Want to be a Cancer Registrar?
Right Livelihood- support yourself without harming others Challenging Worthwhile MAKING A POSITIVE DIFFERENCE! My answer to this question is WHY NOT? It’s something I cannot explain, other than I knew this is MY job!

7 Sample Case Scenario The Story
Michael Mouse, aka Mickey--76-yr old married, white male, retired actor, lives in Jackson, WY. Presented to St. John’s Hospital w/ chief complaint of frequent & urgent urination (3-4x/night). Mickey’s PSA was elevated at 22.5 (normal range 0-4). Mickey’s H&P were basically unremarkable. He is in excellent health for a gentleman of his age. A prostate nodule was detected on digital rectal exam (DRE). Mickey agreed to needle biopsies of his prostate. Needle bxs indicated that both prostatic lobes were involved with invasive adenocarcinoma. Treatment options were discussed. Mickey agreed to hormone therapy followed by radical prostatectomy. The prostate gland was removed. The 6 lymph nodes dissected were negative, as were the surrounding tissues & surgical margins. Via CT scans, a metastatic work up was performed to determine the extent of his disease. All scans were negative. Mickey’s disease was confined to his prostate gland with no evidence of disease spread. It is easiest to abstract a case when medical records are organized in chronological order—in doing so, a story is told of the patient’s history, cancer diagnosis, treatment and outcome

8 Summary of the Story Staging Treatment Outcome
T2-tumor involvement - both prostate lobes N0-lymph node involvement - none M0-Metastases to bones and/or distant organs – none T2 N0 M0- tumor involvement in both lobes; ln neg; no evid mets Stage 2, Local Disease Treatment Hormone Treatment followed by Radical Retropubic Prostatectomy w/6 lymph nodes sampled Outcome Patient is Alive Cancer Status is No Evidence of Disease (NED) Good Prognosis! Cancer abstracting is a way of pulling out the necessary information needed to tell a patient’s cancer “experience” in a combination of codes w/narrative support. This is the summary of pages and pages of medical records.

9 The Cancer Abstract – Part 1
Patient Information (Demographics) MOUSE, MICHAEL WALTER aka MOUSE MICKEY CTR #: Hos #1 ST. JOHN'S HOSPITAL Hosp. # Admit: 01/10/ CC:1 DX / RX Chart: Acc Yr:2005 Payer:60 (Medicare/Medicade) Abs:BLG Reporting Source: 1 HOSPITAL-IN Follow-up Hospital: 1 SSN: Sex : 1 MALE Date of Birth: 04/15/1928 ADDR AT DX: 444 FRIENDSHIP BLVD JACKSON WY 83331 FU ADDRESS: PO BOX JACKSON WY 83331 Marital St:2 MARRIED Place of Birth: 097(Calif) Age at Dx: 76 yrs Race: 010 WHITE; non Hispanic County: 039 TETON Occupation: ACTOR Industry: WALT DISNEY ENTERPRISES I’ve divided the cancer abstract into 4 parts: The first one being patient information, demographics

10 The Cancer Abstract – Part 2
Disease Specific Information Date of Dx: 01/01/2005 Histology(2): ADENOCARCINOMA GRADE: II MOD DIFF. Hist-3: ADENOCARCINOMA Site: C619 PROSTATE Stage: Stg-2000: Paired Organ:0 NOT PAIRED ORGAN Diag. Conf.: 1 HISTOLOGY Tumor Size: 999 mm. Positive Nodes: Nodes Examined: 08 Clinical: TNM: AJCC Stage: Staged by: NOT STAGED Pathological: TNM: AJCC Stage: Staged by: NOT STAGED Sites of Distant Metastasis: 0 NONE NONE NONE Disease Specific Information – date of diagnosis, primary site of cancer, morphology= histology, behavior code (\0 \2 \3), grade (how different are cancer cells form the normal cells---greater the difference then higher the grade), confirmation of diagnosis

11 The Cancer Abstract – Part 3
Best Treatments Code Date DIAG/STG /00/0000 SURG /10/2005 RAD /00/0000 CHEM /00/0000 HORM /15/2005 BRM /00/0000 OTHER /00/0000 Surgical Approach: 8 (retropubic) 1st course: Scope LN Surg 0 Surg Other Site 0 Reg’l LN Examined 06 Subseq Reconstruct Del: 0 Treatment summary – types of treatment, day administered

12 The Cancer Abstract – Part 4
Follow Up Information Physicians 21436 ROLAND FLECK 24481 LISA J FINKELSTEIN 28231 ST. JOHN’S HOSPITAL Survival Time: 1 Yr. 9 Mon. Date Last Seen: 10/27/2006 Vital Status:1 (alive) Cancer Status: 1 (no evidence of disease) Follow up-Central Registry sends a letter to patient’s follow up physician requesting date patient last seen, cancer status. Patients are followed on a yearly basis. The Central Registry has no direct patient contact.

13 Acknowledgments THANK YOU!
Cancer Registry Management Principles & Practices Hutchison, Roffers, Fritz (editors) National Cancer Registrars Association (NCRA); Alexandria, Virginia Diagnosis & Treatment Workgroup –WY Comprehensive Cancer Control Coalition HIM & Cancer Registry Professionals Everywhere – THANK YOU! And now, It’s Time to Go! Thank you I will be my new position as a hospital Exempla/St. Joseph’s Hospital in Denver on November 13 Special thanks to Dr. Barnes for making me feel welcome in the WCCCC. She is a wonderful advocate for the Cancer Registrar


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