RIS Brings Sarcoma Education to U of M and Mayo

Clohisy-AThe 2016 Rein in Sarcoma (RIS) scholars recently organized two highly educational and inspirational lunch lectures at the University of Minnesota and at the Mayo Clinic. The lectures brought together sarcoma scholars, doctors and medical students to discuss the importance of listening closely to patients and properly diagnosing sarcoma cancers.

On Tuesday, March 29 scholars Brendan Coutu and Susan Sun organized the University of Minnesota sarcoma lunch lecture on campus. Dr. Katie Dusenbery introduced the speakers, Kayla Dickhoff, a mother who lost her young daughter to sarcoma, and Dr. Denis Clohisy, MD who spoke to students about the importance of proper diagnosis. He stated that it’s always important to get a second opinion whenever they have the intuition that something about a patient’s symptoms are unusual.

Kayla Dickhoff spoke about her daughter Jocelyn’s sarcoma story. Dickhoff expressed frustration that she had continually voiced her concerns about her daughter Jocelyn’s health but wasn’t taken seriously by her doctor until it was too late. She had been concerned about the growing bump near Jocelyn’s tailbone since the time her baby was two weeks old. Furthermore, she had expressed her concern at every well child checkup but continued to be told by her doctor that it was just a cyst and nothing to be concerned about. By the time Kayla was one-year old the cyst had grown to the size of a golf ball and she had hemorrhoids, later attributed to a second tumor. The doctor finally took Jocelyn’s condition seriously and contacted another doctor. Jocelyn was then referred to the University of Minnesota.

Unfortunately by this time the cancer had spread and Jocelyn was put on a rigorous cancer treatment with several rounds of chemotherapy, surgery and radiation. Jocelyn fought a long and hard seven year cancer battle. Jocelyn passed away on July 6, 2013 at just seven years old. Jocelyn’s mom, Kayla believes her daughter would’ve survived if she would’ve been diagnosed correctly as an infant. In Kayla Dickhoff’s own words, “Jocelyn fought a very hard and nasty cancer, one that I have every confidence she would’ve beaten with an early diagnosis.”

Dr. Clohisy spoke next about the importance of early and accurate diagnosis of sarcoma cancers. Clohisy emphasized to “always listen to your patients, particularly a parent.” He emphasized that Kayla Dickhoff had been expressing her concerns and that the doctor should have listened. He stressed the importance of doctors taking the time to listen to their patients to hear their stories. He said the core principles are “listening to them, examining them and recognizing when something is different.” He also made a point that it’s important for doctors to get a second opinion when they are unsure of something. He said, “If something doesn’t make sense then you have to have someone help you out.” He said he gets second opinions about sarcomas all the time.

The Mayo Lunch Lecture was on Friday, April 1st at the Mayo campus and featured case studies researched by sarcoma scholars Justin Maroun and Maggie Cupit along with Maggie Cupit’s sarcoma story and a presentation by Dr. Scott Okuno MD.  Dr. Okuno,  gave an overview of how to identify a sarcoma tumor from a noncancerous tumor. He talked about the total number of sarcoma patients versus patients with other types of cancer and explained why sarcomas are often overlooked and misdiagnosed. He emphasized the importance of knowing how to diagnosis sarcomas as early diagnosis is key to a patient’s survival.

Dr Okuno talk  served as an introductions to sarcoma scholars Justin Maroun and Maggie Cupit who share three sarcoma case studies and asking the students questions about how they would’ve diagnosed these patients. One of these studies involved bone growing around teeth as the first symptom of sarcoma. Maroun asked the students how they would’ve diagnosed this condition. He also discussed and asked the students questions about the other case studies. He emphasized that if a patient’s condition seems unusual it is important to figure out what’s wrong.

MayoLecture1Next, Chelsey Olafson a RIS volunteer for both the Marketing Department and the Patient and Family Support Committee spoke about her cancer journey. Olafson was misdiagnosed four times in five years. She was her own advocate and kept telling her doctors over and over again that something was wrong. Olafson’s persistence paid off. After five years of being told she had just a benign lump Olafson was diagnosed with sarcoma and was treated with radiation at the University of Minnesota. She is now ten months cancer free.

Sarcoma Scholar Maggie Cupit then shared with the students her personal journey from Ewing Sarcoma patient to sarcoma scholar. Like Olafson, Cupit stated that it was her persistence that helped her get the proper treatment. The pain in her leg was misdiagnosed as an injury but Cupit kept insisting that something more serious was wrong. She was eventually diagnosed with Ewing Sarcoma and was treated at St. Jude’s Hospital. Now she is a second year medical student at Mayo and a RIS sarcoma scholar. When a med student asked Cupit how to decide when to be frugal for the sake of the clinic and when to spend money on patients, Cupit stated she believes that if something is unusual it’s worth spending the extra money on MRIs and/or biopsies. Cupit’s message was it’s better to be safe than sorry.

Mayo2The presentations concluded with an introduction of RIS by President Pete Wyckoff. Wyckoff spoke about his daughter Karen’s sarcoma story and about what how RIS reaches out to people affected by sarcomas through patient support, education and research. Wyckoff also talked about the RIS 2016 Party in the Park and how students could get involved with attending and even volunteering at the event.

The common theme among the two lunch lectures is the importance of doctors taking caution when a patient’s symptoms are atypical. Receiving a second opinion may be crucial to saving a patient’s life. Although sarcoma cancers are rare they are highly aggressive cancers and early diagnosis is key to patient’s survival.

RIS with our sarcoma scholars will present a third Medical School presentation on Tuesday, April 12th  at the University of Minnesota Duluth Medical School.  This evening lecture will feature Dr. Christian Ogilvie and sarcoma survivor Chelsey Olafson. If you would like to “audit” this presentation you can learn more on  our event calendar and see us on Facebook