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

PURPLE POST

LaBahn Pancreatic Cancer Program Newsletter VOLUME 2, ISSUE 3| OCTOBER 2022

N

ovember is a special time of year for many people. With the change of the

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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

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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

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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.

Susan Tsai, MD, MHS - Director, LaBahn Pancreatic Cancer Program

IN THIS ISSUE 2 SHINE COMMUNITY EVENT

3 PANCREATIC CANCER AWARENESS MONTH GREATER MIDWEST

4 SCREENING CLINIC

INTRO TO GENETIC

5 COUNSELING

PATIENT FEATURE -

6 RON BREFKA

SURGIGAL ONCOLOGY

7 TISSUE BANK

STAFF FEATURE - LAUREN

7 NEWELL

Purple 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 414955-1423.

Follow us: @MCWPancreasProgram @MCWPancProgram

Shawnee Daniels Sykes'

SHINE 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 Insights on Cancer Care (SHINE) event was initiated by Dr. 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 awareness event.

The purpose of SHINE is to raise awareness in the community about the five most common cancers affecting Wisconsinites. This community outreach event will be supported by St. Martin De Porres, All Saints, St. Francis, St. Michael parishes of Milwaukee, and the MCW Clinical & Translational Science Institute of Southeast Milwaukee (CTSI).

The SHINE event will run from 8 AM to 3 PM on Saturday, November 19, 2022, at St. Martin De Porres Catholic Church, Milwaukee, WI. The topics presented will focus on pancreatic cancer as well as breast, prostate, lung, and colon cancers. The morning sessions will provide 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, healthcare professionals, and attendees.

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

Pancreatic Cancer Program Updates | Volume 2, Issue 3 | Page 2

EVENINGS WITH EXPERTS: A VIRTUAL LECTURE SERIES Join us throughout November to learn about pancreatic cancer and have the chance to win a gift card at the end of each presentation.

NOV 1 | 5:00 PM - 5:30 PM CST

NOV 8 | 5:00 PM - 5:30 PM CST

Karen Kersting, PhD, LCP: Psychosocial preparation for surgical recovery

Nikki Lytle, PhD: Pancreatic Cancer: Of Mice and Men

NOV 2 | 5:00 PM - 5:30 PM CST

NOV 9 | 5:00 PM - 5:30 PM CST

Susan Tsai, MD, MHS: Overview of diagnosis and treatment

Douglas Evans, MD: Second Opinions, Navigating Insurance, and Other Controversies and Challenges in Cancer Care

REGISTER HERE : bit.ly/22novpanc | Lecture series co-sponsored by the Seena Magowitz Foundation

Support pancreatic cancer research

We Care Funds Pancreatic Cancer Research Total Funded Investigators Total Funded Projects NIH Funded Projects

$367,494 DOLLARS AWARDED SINCE 2013

Join us for good eats and a chance to support pancreatic cancer research. The following restaurants have graciously agreed to donate a portion of the proceeds from sales during a giveback event.

NOVEMBER 1 & 15 , 2022 Locations: Brookfield | Greenfield | Waukesha

NOVEMBER 12, 2022 Location: Brookfield location only

Mention MCW fundraiser when ordering in person OR use code FUNDMCW22 online

Pancreatic Cancer Program Updates | Volume 2, Issue 3 | Page 3

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

In general, an initial visit to the GPS clinic includes a day of coordinated appointments, including consultation with a genetic counselor, a surgical oncologist, dietician, labs, and pancreatic protocol MRI. Patients receive follow-up care and screening based upon their initial assessment.

Patients in the GPS clinic also have the opportunity to support pancreatic cancer research. They may choose to have additional blood collected at the time of their lab appointment that is stored in our Surgical Oncology Tissue Bank. Currently, these samples go to support NIH-funded research to develop a novel blood test for early detection for pancreatic cancer. Stay tuned for our feature on this project in the next newsletter.

If you or someone you know is interested in learning more about the GPS clinic or scheduling an initial consult, please contact our new patient coordinators at (414) 805-6849.

VIRTUAL PURPLELIGHT MILWAUKEE 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

Pancreatic Cancer Program Updates | Volume 2, Issue 3 | Page 4

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.

The first step to assess for a hereditary cancer syndrome is to meet with a cancer genetic counselor. The genetic counseling appointment starts by obtaining information on someone’s personal and family history of cancer and related symptoms. This information is used to determine the chance for a hereditary cancer syndrome in the family. The genetic counselor discusses possible hereditary cancer conditions including risks and management and reviews the option for genetic testing if deemed appropriate.

Pancreatic cancer is rare and almost all patients with pancreatic cancer are recommended to be referred to a genetic counselor. Most patients are referred for genetic counseling by a cancer care provider or primary care provider. Recent estimates suggest that up to 20% of pancreatic cancer cases are a result of a hereditary cancer syndrome identified through genetic testing and is higher than some other types of cancers. This means 80% of pancreatic cancer diagnoses are not a result of a hereditary cancer syndrome.

There are several benefits and goals for genetic testing. First, genetic testing could identify an inherited cause for a personal or family history of a cancer. Secondly, genetic testing results can be used by doctors to change medical management or a patient’s care. These changes could be things such as altering a cancer treatment plan, screening for other types of cancers, or discussing other cancer risk-reducing options. Third, genetic testing could provide information for family members so they can better understand their risk of developing cancer.

Genetic test results may be useful for biological family members (those related by blood) because they have an increased chance of also having the inherited genetic variant. For biological relatives carrying a genetic mutation, this could help detect cancer at an earlier stage and provide an opportunity to learn ways to reduce their risk of developing cancer.

The decision to undergo genetic testing is highly personal and meeting with 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 ultimately the patient’s decision to move forward with testing.

Genetic counseling is just one step in the approach to care for pancreatic cancer patients at Froedtert and the Medical College of Wisconsin. Our cancer team has four genetic counselors who work closely with patients and their care team to help communicate the process of genetic counseling and testing to allow for the most informed care for patients as possible.

Patients who are interested in meeting with a genetic counselor due to a personal or family history of cancer may discuss with their doctors if a referral is appropriate.

Percentage of pancreatic cancer diagnoses that are hereditary

Percentage of all cancers that are hereditary

Pancreatic Cancer Program Updates | Volume 2, Issue 3 | Page 5

Remembering 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 raise money in support of pancreatic 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.

Pancreatic Cancer Program Updates | Volume 2, Issue 3 | Page 6

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.

By the Numbers 1,046 Blood Draws in 2022 331 Patients Enrolled in 2022

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.

Enrollment by Diagnosis 2010 2022 *PDAC - pancreatic ductal adenocarcinoma

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

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!

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

Pancreatic Cancer Program Updates | Volume 2, Issue 3 | Page 7

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

LaBahn Pancreatic Cancer Program Newsletter

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