Under the direction of our Sarcoma Scholars, Rein in Sarcoma brought an educational experience to each of the medical schools in Minnesota. On March 7th, Scholar Aubrey Thyen organized a dinner lecture for the first and second year students at UMN Duluth. During their pizza dinner, the students heard the heartrending story of Joslyn Dickhoff’s misdiagnosis, several year battle, and eventual loss of life to sarcoma at age seven. Her mother Kayla journeyed from Belgrade, MN to share Joslyn’s story and illustrate to the medical students how tragic the consequences of a misdiagnosis can be.
Dr. Christian Ogilvie delivered a lecture on the diagnostic characteristics of sarcoma and the importance of including them in a differential diagnosis of a lump or a bump. Kevin O’Keefe ended the evening with his 18 year survival story and the value of vigilant follow up. He told about his reoccurrence of sarcoma and how his bladder cancer was discovered on a follow up sarcoma visit.
Two days later was the medical students at the UMN Twin Cities turn to learn about sarcoma, organized by Sarcoma Scholars Mel White and Robert Gao. Jan Maudlin related her sarcoma story. She was misdiagnosed for several months before the sarcoma was diagnosed. Her sarcoma has not returned, however she has been through treatment for several other cancers. She urged the students to listen to their patients carefully and to show compassion for patients as people as they go through the arduous treatment for sarcoma.
Dr. Denis Clohisy followed Jan’s talk with his insights for students on what they needed to know to diagnose sarcoma. He also spoke of the importance of correct early treatment. One example he gave was the importance of having a doctor who knows something about sarcoma doing incisional biopsies so that follow up surgery can be sure to get a wide enough margin.
The RIS Sarcoma Road Show ended at the Mayo Clinic where scholars Nazanin Yeganeh Kazemi and Ashley Paquin organized the program. Rozella Pearson told the story of her older sister who was misdiagnosed, subsequently dying of sarcoma. Her emotional story was followed up by a fascinating talk by Dr. Scott Okuno, which he delivered in a dialogue style, showing imaging, then asking the students what they thought. He expanded his questions into a full history of several patients. Kevin O’Keefe once again told his story to the students. The following Monday, Dr. Ogilvie delivered a major lecture to students at the University of Minnesota on Bone Cancers and Sarcoma.
It was an exciting month of sarcoma medical education. Not too many years ago, sarcoma was not even included in the curriculum and it seems likely that contributes to the high rate of misdiagnosis. As Dr. Clohisy says, “You can’t diagnose what you don’t know.” Rein in Sarcoma is working very hard to bring education to the whole medical community in order to reduce misdiagnosis and improper first treatment. We are striving to raise awareness and save lives. We thank all of the Scholars, Patients and Doctors who worked with us on this inspiring month of education and our photographers, Ron Eggert and Pete Wyckoff.