With the support of physician experts, Sarcoma Scholars, and patient and family volunteers, RIS raised sarcoma awareness among more of the medical community in May! On Tuesday, May 21, Dr. Christian Ogilvie presented to the soon-to-graduate physician assistant students at Bethel University. Dr. Ogilvie is Associate Professor of Orthopaedic Surgery at the University of Minnesota and Rein in Sarcoma Medical Advisory Board member. Because PAs will be employed in a broad range of healthcare areas, Dr. Ogilvie focused on more general education that applies across the variety of settings in which they’ll be engaged.
Following Dr. Ogilvie, Sarina Morrison eloquently shared her sarcoma journey that began when she was diagnosed with a soft tissue sarcoma at 23 years. Sarina said she feels very blessed to have had a doctor who recognized the seriousness of the growing lump in her leg and insisted she get an MRI, even though it was “probably just a cyst or injury from running.” Sarina shared the dramatic changes in her life following her diagnosis. She suddenly went from a very active, healthy young woman to a sarcoma patient undergoing chemotherapy, radiation therapy and surgery. After her talk, Sarina graciously offered to answer the students’ many questions, including how they can support their future patients. As a sarcoma survivor, Sarina shared with the students some insights on the “new normal” life that follows any cancer diagnosis - how her life has changed and some of the challenges she now faces.
On May 29, Mylan Blomquist and Taylor Weiskittel, RIS Maudlin Sarcoma Scholars at Mayo, planned and hosted the Mayo medical student sarcoma lecture. Dr. Brittany Siontis, Mayo Clinic Assistant Professor of Medical Oncology, began the hour with an excellent “Introduction to Sarcoma” presentation. Two of her important take-aways for the students were:
- Recognition of suspicious lumps and imaging before biopsy can improve outcome
- Early involvement of an experienced sarcoma center improves outcome and is strongly encouraged
Sue Wyckoff shared her daughter Karen’s story of her four-year battle with synovial sarcoma. In many ways, Dr. Siontis had told Karen’s story; she was misdiagnosed, her biopsy was incorrectly read as a lipoma, and she was told she could wait several months until she got home to have the growth removed. When she got home and it was removed, it was a large synovial sarcoma. Many treatments followed, but she was able to go back and finish college and be a Lutheran Volunteer for a year before it returned in her lungs. She spent two more years undergoing rigorous treatments. Karen wanted physicians to:
- Know sarcoma exists and do a proper diagnosis.
- Listen to your patient. Even at 19 they are in charge of their treatment. As she told her doctor, he was the quarterback, she was the owner of the team and her parents were the fans.
- Know your patient’s hopes and dreams and help them live as full a life as possible during treatment.
Karen had a dream of a world without sarcoma cancers. To that end, Karen wished to raise awareness and fund cures and shortly before she died raised $10,000 at the first Rein in Sarcoma Party in the Park. Sue closed with Karen’s words from an essay she wrote long before her sarcoma diagnosis, “I hope that when I die, I will be able to look back on a life that was fulfilling and was spent living, not waiting to die.”
Pete Wyckoff rounded out the program with an overview of Rein in Sarcoma and the work being done to fulfill the mission. He shared that over the past 19 years, the organization founded by Karen has raised more than $2 million for research and has grown to be the largest and best-known sarcoma organization in the Midwest.
Physician presenters at both education sessions highlighted the red flags of sarcoma and asked the students to consider sarcoma whenever they see a patient with a golf ball size lump. As a reminder, each student received the “Is It Sarcoma?” golf ball with attached red flags reminder card.
Thank you to all the presenters for sharing their time and expertise. Kudos to Marlene and Dave Dolney, Red Flags Committee members, and Dr. Wallace Boeve, Bethel University Physician Assistant Program Director, for arranging the Bethel University presentation.
The Sarcoma Family Picnic 4:30 p.m – 6:00 p.m. is for all those affected by sarcoma – patients/survivors and their close family and friends, and those who have lost a loved one to sarcoma. It is an opportunity to share good food, fellowship and mutual support. Attendance is free, but limited, with a registration deadline of July 22, so sign up soon. We hope all picnic goers will continue the evening’s fun by staying for the Party in the Park, which immediately follows the Picnic. This year, Picnic registration includes all the Party activities.
The Party in the Park is also open to the public so invite your neighbors, friends and extended family. There are lots of fun activities for the kids, a silent auction, raffle, sarcoma stories, a inspirational program and musical entertainment. Several changes are taking place this year – the Party activities will be right at the picnic grounds (with the exception of the Carousel rides), and the event registration is free – register soon.. All donations and proceeds from the event will go towards Rein in Sarcoma’s three-pronged mission of educating, supporting patients and families, and funding sarcoma cancer research.
Rein in Sarcoma was well represented at the University of Minnesota, Masonic Cancer Center’s 14th Annual Cancer Survivorship Conference. To accommodate a much larger group (over 375 patients and family members), the event was moved to the UMN Masonic Home in Bloomington. A broad array of topics was covered - short term to long term side effects, nutrition, communication, research updates. Former local news anchor Roxanne Battle shared an uplifting message, sending us forward to keep celebrating our days. We look forward to the 15th annual conference and share our appreciation of the UMN Masonic Cancer Center and our community members who work to help each other, support our community and improve outcomes!