LaBahn Pancreatic Cancer Program's Purple Post - Volume 2 Issue 3

PURPLE PPOST URPLE POST

N ovember is a special time of year for many people. With the change of the seasons, we witness nature’s beauty transitioning from brilliant fall colors into a

snowy winter landscape. As we come together at the end of the month for Thanksgiving, we are reminded to give thanks to the joys of friends, family, and life. November is an especially important month for the LaBahn Pancreatic Cancer Program since it is also pancreatic cancer awareness month In this issue, we shine a light on opportunities to raise awareness about pancreatic cancer in our community. A special focus will center on pancreatic cancer screening and early detection. We are fortunate to partner with the Archdiocese of Wisconsin and the Clinical and Translational Science Institute of Wisconsin to sponsor this inaugural cancer symposium to be held at five Black parishes in Milwaukee This event was developed with Shawnee Daniel Sykes who is being treated for stage IV pancreatic cancer and is committed to raising awareness about pancreatic cancer in her community. Also this November, you are again invited you to join us for a series of virtual educational sessions with our faculty. Lastly, consider enjoying a great meal and supporting pancreatic cancer research by attending one of the give back events at Lou Malnalti's Pizza and Brunch Restaurant throughout November To address genetics and hereditary pancreatic cancer, a special feature of this issue is provided by one of our phenomenal genetic counselors Learn about the role of genetic testing as well as the high risk pancreatic cancer screening program. Finally, this issue is dedicated to a long time supporter of program and cancer survivor, Ron Brefka, who unexpectedly passed away this fall. Ron and many other loved ones that we have lost will be foremost in our hearts and mind this month.

Tsai, MD, MHS Director, LaBahn Pancreatic

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COMMUNITY EVENT

CANCER AWARENESS MONTH

MIDWEST SCREENING CLINIC

TO GENETIC COUNSELING

FEATURE RON BREFKA

ONCOLOGY

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Purple PPost urple Post

The Purple Post Newsletter is a publication by the LaBahn Pancreatic Cancer Program to provide patients, family, and loved ones with informative and current topics at the Medical College of Wisconsin. Issues are published every February, June, and October.

Art + Production

Lori Keiser, BS, MA Melissa Mena, BS, CCRC

Editing Beth Krzywda, APNP

LaBahn Pancreatic Cancer Program Director

Susan Tsai, MD, MHS

LaBahn Pancreatic Cancer Program 8701 W Watertown Plank Rd Wauwatosa, WI 53226 mcwpancreas@mcw.edu

© Copyright 2022 LaBahn Pancreatic Cancer Program

All rights reserved No part of this publication may be reproduced by any means, prints, electronic, or any other, without prior written permission of the publisher.

For questions, comments, or to submit an idea for an upcoming newsletter, please contact us at mcwpancreas@mcw.edu or 414 955-1423

Follow Fus:

Shawnee Daniels Sykes'

S H I N SE H I N E

COMMUNITY EVENT

By: M. Muska Nataliansyah, MD, MPH, PhD

In time for Pancreatic Cancer Awareness Month, the MCW LaBahn Pancreatic Cancer Program is organizing a community outreach event on November 19, 2022. The Shawnee Daniels Sykes’ Sharing InsightsonCancerCare(SHINE)eventwasinitiatedbyDr.Shawnee Daniels Sykes, who is a Professor of Theology and Ethics at Mount Mary University. As a person with stage IV pancreatic cancer, her personal experience with cancer and the complexities of receiving care have sparked the idea of creating a community-based cancer awarenessevent.

ThepurposeofSHINEistoraiseawarenessinthecommunityabout the five most common cancers affecting Wisconsinites. This community outreach event will be supported by St. Martin De Porres,AllSaints,St.Francis,St.MichaelparishesofMilwaukee,and the MCW Clinical & Translational Science Institute of Southeast Milwaukee(CTSI).

TheSHINEeventwillrunfrom8AMto3PMonSaturday,November 19,2022,atSt.MartinDePorresCatholicChurch,Milwaukee,WI.The topics presented will focus on pancreatic cancer as well as breast, prostate,lung,andcoloncancers.Themorningsessionswillprovide an overview of each cancer and highlight specific screening. The afternoon sessions will center on the patient experience through lifestyle adjustments and opportunities for research participation. Each session will include interactive discussions with MCW specialists,healthcareprofessionals,andattendees.

The SHINE event is open to the public, and you can RSVP by emailing wmo@archmil.org, scanning the QR code, or visiting the website. Meals and handouts will be provided during the event. We look forward to seeing you there! event Website: https://bit.ly/SHINE22

NOV1|5:00PM-5:30PMCST

KarenKersting,PhD,LCP:

SusanTsai,MD,MHS:Overviewof

NOV8|5:00PM-5:30PMCST NikkiLytle,PhD:Pancreatic Cancer:OfMiceandMen NOV9|5:00PM-5:30PMCST

DouglasEvans,MD:Second Opinions,NavigatingInsurance, andOtherControversiesand ChallengesinCancerCare

GPS: Greater Midwest Pancreatic Cancer Screening Clinic

Early Detection of Pancreatic Cancer

By: Lori Keiser, BS, MA

The American Cancer Society estimates that in 2022, about 2,210 new cases of pancreatic cancer will be diagnosed in the United States. Currently, screening for pancreatic cancer is not recommended for the general population, but screening guidelines have been defined for individuals with certain known hereditary cancer syndromes or a strong family history of pancreatic cancer. At Froedtert & the Medical College of Wisconsin, the Greater Midwest Pancreatic Cancer Screening Clinic, (GPS clinic), provides high risk individuals with a multidisciplinary approach to include genetic counseling, dedicated pancreatic imaging, and input from surgical oncology.

Individuals deemed high risk for developing pancreatic cancer typically meet one or more of the following criteria:

Two or more first-degree relatives with pancreatic cancer

Three or more of any relatives with pancreatic cancer

Certain hereditary cancer syndromes and/or gene mutations

Ingeneral,aninitialvisittotheGPSclinicincludesadayofcoordinatedappointments,including consultation with a genetic counselor, a surgical oncologist, dietician, labs, and pancreatic protocolMRI.Patientsreceivefollow-upcareandscreeningbasedupontheirinitialassessment.

PatientsintheGPSclinicalsohavetheopportunitytosupportpancreaticcancerresearch.They maychoosetohaveadditionalbloodcollectedatthetimeoftheirlabappointmentthatisstored inourSurgicalOncologyTissueBank.Currently,thesesamplesgotosupportNIH-fundedresearch todevelopanovelbloodtestforearlydetectionforpancreaticcancer. Staytunedforourfeature onthisprojectinthenextnewsletter.

IfyouorsomeoneyouknowisinterestedinlearningmoreabouttheGPSclinicorschedulingan initialconsult,pleasecontactournewpatientcoordinatorsat(414)805-6849.

V I R T U A L P U R P L E L I G H T M I L W A U K E E

PurpleLight is a gathering of survivors, family, and friends who have been impacted by pancreatic cancer. During this event, there will be a ceremony that includes a reading of names, honoring survivors, and remembering those we've lost to pancreatic cancer.

NOV 10, 2022 5:30 7:30 PM 631 E Chicago St. MKE, WI 53202

An Introduction to Cancer Genetic Counseling

By: CJ Christian, MS, CGC Genetic Counselor

Cancer genetic counselors are health care providers who assess individuals for a hereditary risk for cancer. Hereditary cancer is a result of a disease causing genetic variant, also known as a genetic mutation, that is passed through a family. Anyone with this variant has an increased risk of developing cancer in their lifetime. It’s important to know that simply having the variant does not mean someone will develop cancer. Cancer genetic counselors provide a wealth of education on the role of genetics in individual cancer risks and can facilitate genetic testing.

Thefirststeptoassessforahereditarycancersyndromeistomeetwithacancergeneticcounselor Thegenetic counselingappointmentstartsbyobtaininginformationonsomeone’spersonalandfamilyhistoryofcancerand relatedsymptoms.Thisinformationisusedtodeterminethechanceforahereditarycancersyndromeinthe family Thegeneticcounselordiscussespossiblehereditarycancerconditionsincludingrisksandmanagement andreviewstheoptionforgenetictestingifdeemedappropriate.

Pancreaticcancerisrareandalmostallpatientswithpancreaticcancerarerecommendedtobereferredtoa geneticcounselor.Mostpatientsarereferredforgeneticcounselingbyacancercareproviderorprimarycare provider.Recentestimatessuggestthatupto20%ofpancreaticcancercasesarearesultofahereditarycancer syndromeidentifiedthroughgenetictestingandishigherthansomeothertypesofcancers.Thismeans80%of pancreaticcancerdiagnosesarenotaresultofahereditarycancersyndrome

Thereareseveralbenefitsandgoalsforgenetictesting First,genetictestingcouldidentifyaninheritedcause forapersonalorfamilyhistoryofacancer.Secondly,genetictestingresultscanbeusedbydoctorstochange medicalmanagementorapatient’scare.Thesechangescouldbethingssuchasalteringacancertreatmentplan, screening for other types of cancers, or discussing other cancer risk reducing options Third, genetic testing couldprovideinformationforfamilymemberssotheycanbetterunderstandtheirriskofdevelopingcancer. Genetictestresultsmaybeusefulforbiologicalfamilymembers(thoserelatedbyblood)becausetheyhavean increased chance of also having the inherited genetic variant. For biological relatives carrying a genetic mutation,thiscouldhelpdetectcanceratanearlierstageandprovideanopportunitytolearnwaystoreduce theirriskofdevelopingcancer

Thedecisiontoundergogenetictestingishighlypersonalandmeetingwith a genetic counselor does not automatically result in genetic testing. The genetic counselor will advise patients on the recommendation to pursue testing or not based on the assessment during their appointment It is ultimatelythepatient’sdecisiontomoveforwardwithtesting.

Geneticcounselingisjustonestepintheapproachtocareforpancreatic cancer patients at Froedtert and the Medical College of Wisconsin Our cancer team has four genetic counselors who work closely with patients andtheircareteamtohelpcommunicatetheprocessofgeneticcounseling and testing to allow for the most informed care for patients as possible

Patientswhoareinterestedinmeetingwithageneticcounselorduetoa personal or family history of cancer may discuss with their doctors if a referralisappropriate

Percentage of pancreatic cancer diagnoses that are hereditary

Percentage of all cancers that are hereditary

Remembering Ron RBrefka emembering Ron Brefka

By: Lori Keiser, BS, MA

Ron "Ronster" Brefka was a 6 year pancreatic cancer survivor, research advocate, and motorcycle enthusiast. In 2016 he started feeling unwell and pursued a medical evaluation. He underwent imaging and a biopsy that resulted in a diagnosis of a very rare form of pancreatic cancer called acinar pancreatic cancer. This form of cancer accounts for only about 12% of pancreatic tumors in adults.

He completed preoperative (neoadjuvant) chemotherapy and radiation, followed by surgery. His surgery was challenging and removed a large portion of his pancreas After surgery, he became an insulin dependent diabetic It took him almost a year post surgery to start feeling like himself again.

After his recovery, Ron felt compelled to do something to help others facing a similar diagnosis. In 2016, he organized the High Voltage Motorcycle Show to raise money for the We Care Fund at the Medical College of Wisconsin which supports pancreatic cancer research. In 2018, he brought back the High Voltage Ice Races, which are motorcycle races on ice, these also served as We Care Fund fundraisers. Over the years, Ron dedicated his time to being a research advocate and fundraiser. He used his greatest passion in life motorcycles, to bring people together to tic cancer research.

In 2020, a blood test revealed that Ron's cancer had spread to his liver.

His doctors informed him this wasn't uncommon for his type of cancer.

He underwent a second surgery that removed a portion of his liver and gallbladder. In the years following his diagnosis and treatments, Ron spent his time planning High Voltage Motorcycle events, working on fabricating custom metal fenders for bikes in his 7 Metal West shop in Milwaukee, WI, and spending time with the many friends he made through his love for motorcycles.

Tragically, Ron passed away after an ontrack motorcycle accident this past August in Sturgis, South Dakota. Here at MCW, we are grateful to Ron for his dedication to supporting pancreatic cancer research and for his friendship. His legacy as a cancer survivor and patient advocate have left an indelible mark on our community and our program.

Ronald Burklund Eich Biorepository & Clinical Database

The LaBahn Pancreatic Cancer Program supports the MCW Surgical Oncology Tissue Bank which is a biorepository that collects biological samples and matched health information The MCW Surgical Oncology Tissue Bank was established in 2009 and serves as an unparalleled resource for cancer researchers Biological samples from the tissue bank have been used to support a variety of research initiatives including early detection biomarkers, drug optimization, and novel therapeutic drug development, for example

Each new patient to our program is approached by research personnel about contributing data and specimens to the MCW Surgical Oncology Tissue Bank If a patient consents, we collect blood and sometimes tumor tissue from discarded specimens for research purposes Participation in the biorepository does not impact the clinical care in fact, any testing for clinical care is prioritized over any research testing

The MCW Surgical Oncology Tissue Bank also has a unique program which allows patients to donate tumor tissues after death. This is often referred to as a “rapid autopsy” program, where patients may choose to donate their remains for pancreatic cancer research after death. This is one of a handful of such programs across the country.

Over 90% of patients treated in the LaBahn Pancreatic Cancer Program participate in the MCW Surgical Oncology Tissue Bank and we are extraordinarily fortunate to be supported by the generosity of our patients. For more information about the Surgical Oncology Tissue Bank, feel free to contact us at: (414) 955 1442

LaBahn Pancreatic Cancer Team Spotlight

What is your role at MCW and how long have you been a part of the team?

I am a Nurse Practitioner in Surgical Oncology and I have been here at MCW for three years. I have been working with patients with pancreatic cancer for the past 8 years and continue to enjoy working with this patient population.

What do you enjoy most about the work that you do?

I enjoy getting to know our patients well. We see them many times throughout their treatment and after surgery and are able to create relationships with them and their families. I also enjoy working in surgery because even though the job is complex, challenging, and fast paced, it is also very rewarding. We are given the opportunity to be there for patients and advocate for them in one of the most stressful times in their life.

What are some of your interests and hobbies outside of work?

I have a two year old and a four month old, so a majority of my free times is spent with them! Our family loves to be outside and we spend most of our time going on hikes, attending festivals or concerts, and taking our dog to the lake to swim. We are lucky to live in a city that has events and things to do all year round!

By the Numbers

1,046 Blood Draws in 2022 331 Patients Enrolled in 2022

Enrollment by Diagnosis 20102022

*PDAC-pancreaticductaladenocarcinoma

FAVORITE QUOTE

"Do something today that your future self will thank you for "

Lauren Newell, RN, MSN, APNP | Surgical Oncology Nurse Practitioner

LaBahn Pancreatic Cancer Program

Medical College of Wisconsin Division of Surgical Oncology 8701 Watertown Plank Rd. Milwaukee, WI 53226

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