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Dr. Raymond Mailhot presenting on Proton Therapy for Breast Cancer
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Part of our mission is clinical research to discover the full potential of proton therapy in the fight against cancer. In our first decade, our research has made significant contributions to the medical community’s understanding of proton therapy patient outcomes. With more than 150 published journal articles, we have reported long-term prostate cancer outcomes, pediatric brain tumor outcomes, Hodgkin lymphoma outcomes and more than a dozen other disease sites. Last month, Medical Director Nancy P. Mendenhall, MD, was named Clinical Science Researcher of the Year by the University of Florida. We congratulate her on receiving this recognition and are proud to support her quest to uncover more about what protons can do to heal.
Stuart L. Klein
Nancy P. Mendenhall, MD, has been named the 2018 Clinical Science Researcher of the Year by the University of Florida College of Medicine in Gainesville. The recognition comes, in part, for her recent research success in securing an $11.9 million grant for a national prostate cancer study comparing proton therapy to standard radiation treatment.
Each year, the college presents the award to a faculty member for outstanding achievement, productivity and research discovery. Mendenhall is a professor and associate chair of the UF Department of Radiation Oncology. As the medical director of the UF Health Proton Therapy Institute in Jacksonville, she leads the clinical care and research program for the advanced form of radiation treatment – proton therapy. The Clinical Science Research Award is given for research having a close connection with clinical medicine that has a significant impact on the delivery of patient care.
Funded by the Patient-Centered Outcomes Research Institute, the prostate cancer study will enroll 3,000 patients at 42 treatment centers across the United States; half will be treated with standard radiation therapy and half will be treated with proton therapy. The study will collect information for five years on patient-reported quality of life, physician-reported and patient-reported side effects and prostate cancer recurrence. Some participants receiving proton therapy will have the option to be randomly assigned to receive eight weeks of treatment at a lower intensity or four weeks at a higher intensity, to determine which regimen has a greater impact on cure rates and side effects.
Since opening in 2006 under Mendenhall’s leadership, the UF Health Proton Therapy Institute has conducted dozens of clinical trials to treat more than 20 types of cancer. She and her team of clinical researchers have published over 150 articles in medical journals that report on the patient outcomes, treatment techniques and efficacy of proton therapy. She was instrumental in the development and launch of the first peer-reviewed medical journal dedicated to basic and clinical research in particle therapy – The International Journal of Particle Therapy. It is the official journal of the Particle Therapy Cooperative Group, an international organization for those interested in proton, light ion and heavy charged particle radiotherapy.
Prince Harry and Meghan Markle’s wedding isn’t the only one to make history this month. Mark your calendars to witness the first wedding to take place at the UF Health Proton Therapy Institute. Scheduled to be married are patient David “Dave” Leek and his fiancée Bobbie Godden.
Dave and Bobbie have been a couple for nearly 13 years and, until now, they’ve always seen marriage as a piece of paper, said Dave. “We’ve been through thick and thin. We’ve stuck together through everything,” he said. Having traveled from England to Jacksonville to receive proton therapy for a tumor that he has been dealing with for four years has given the couple a new perspective on getting married. “It’s like we’re closing one door. We’re starting a whole new chapter,” said Dave.
While it is the first wedding, the Institute has some experience with celebrating marriage. In October 2014 the Institute hosted a wedding vow renewal for patient Mark Kelso and his wife Kerry who celebrated their second anniversary while he was on treatment.
When it comes to treating rare and challenging brain tumors or neurologic disorders, patients are often referred to the UF Health Proton Therapy Institute and UF Health Jacksonville’s Skull Base Center. Here, a team of highly trained and experienced specialists collaborate to treat patients. The combination of advanced technology and doctors who are surgeons, radiation oncologists, medical oncologists and radiologists who have specific training in the brain and central nervous system makes the center a unique medical resource in the region. Ronny Rotondo, MD, CM, FRCPC, who directs the proton therapy brain tumor program, and Daryoush Tavanaiepour, MD, who directs the Skull Base Center, recently sat down for an interview about skull base tumors.
May 6-12 is National Nurses Week, and the UF Health Proton Therapy Institute has a team of over 20 nurses who serve as case managers, nurse practitioners and researchers. Gail Sarto, RN, BSN, OCN, directs the adult nursing team and Amy Sapp, RN, directs the pediatric nursing team.
According to Ms. Sarto, patient care begins with a holistic approach. Each patient’s treatment is individualized, and a customized plan begins even before the first appointment when the nurse case manager is in touch to gather information. “This makes it possible for the first visit with the medical team to be as comprehensive as possible and for the patient to feel like we know them as soon as they arrive,” she said. In order for the most appropriate treatment plan to be developed, sometimes patients need testing to assure the cancer is properly staged, and nurses assist with testing.
The nurse case manager follows the patient through treatment and provides relief for symptoms and emotional support. “Having this new diagnosis of cancer is challenging, and frequently patients and their families require a lot of assistance with understanding the disease process and getting needed support,” said Ms. Sarto. “We work closely with our social workers to provide patients emotional and physical support. We also work closely with the billing department to assist with insurance issues that require clinical input.”
As patients transition to survivorship following treatment, the nurse case manager provides ongoing support to patients and families. With many patients who live outside of Jacksonville, coordination of care following treatment requires significant resources and support from the proton therapy nurses. “In survivorship, patients may need referrals or interventions. We work with the patient and their local resources to assure the patient’s needs are met,” said Ms. Sarto.
Clinical research is a unique focus of the Institute and nurse case managers along with research nurses are essential in educating patients about clinical trials they may be eligible to participate in as well as gathering data about the treatments’ effects. “Our goal is to provide the best quality of care that is research based,” she said.
The Institute’s nursing philosophy starts with respect for each individual, regardless of background, and includes being a partner with the patient in their care. Ms. Sarto said, “Being part of the patient’s care team is a special privilege.”
The social services and child life team, from left: Heather Oakley, Kim Todd, Stephanie Saman, Jennifer Duncanson.
Clinical social workers and child life specialists across the nation have important roles in patient care. At the UF Health Proton Therapy Institute, we are fortunate to have two full-time clinical social workers and two child life specialists.
Heather Oakley, LCSW, OSW-C, is director of social services and is a pediatric oncology social worker. In addition to managing the social work and child life programs, she is responsible for assisting pediatric patients and their families with social, financial and psychological matters related to their diagnosis and treatment.
Stephanie Saman is an adult social worker and assists patients and their families with both practical and psychosocial needs. She facilitates various support groups for adult patients and their caregivers and connects patients and their families with essential public- and private-sector resources for additional support.
Kimberly Todd is a certified child life specialist who educates, prepares and supports children through difficult tests, procedures and treatment. Her goal is to ease anxiety that young patients may experience. She has developed model programs for proton therapy child life specialists and spearheaded the development and launch of the online teaching tool Proton U.
Jennifer Duncanson is a Go4TheGoal child life fellow who supports children through treatment, teaches coping skills through hands-on educational play, and helps patients and families adjust to daily treatment.
A group of families meet up for dinner and playtime on a Thursday. As the children play, the parents chat with each other about their day and what’s going on in their lives. After a few hours, it’s time to head home for the evening. As the parents gather their children, fond hugs and well wishes are exchanged with the promise to see each other soon.
This seemingly ordinary scenario happens every other Thursday at the UF Health Proton Therapy Institute. Hosted by the pediatric social services team, Family Fun Night, as the gathering is called, brings a sense of the ordinary back into the lives of families with a child who has a life-threatening tumor. Often it brings joy with visits from special guests from the Jacksonville community such as professional sports team members, zookeepers and their animals, or magicians and their tricks.
Family Fun Night is completely free for patients and their families thanks to the generosity of individuals who help fund the meals and activities.
After a prostate cancer diagnosis in the spring of 2010, Barry consulted with different physicians and was not happy with the treatment options. He and Marjorie researched on the internet, found proton therapy and traveled to Jacksonville from their home in Palm Beach Gardens for a tour. They decided proton therapy was the best treatment choice, and he was treated that summer. “My results were great. I had no side effects, no issues,” said Barry.
“While I was being treated, at the same time they were in the early stages of treating children,” he said. “We got to see some of the families and children who were being treated. Seeing these little people with issues. That seemed much more difficult than what I had, even though we were going through the same treatment.”
Since then, the Bergs have made a point to provide an annual gift to the Institute. They recently stepped forward to fund the Family Fun Nights being hosted in June, to help the pediatric patients and families.
Said Barry, “A lot of the people who are treated for prostate cancer are older and retired. Fortunately I was able to go back to work following treatment and am still working. I feel very fortunate to be able to do that and fortunate to be able to share and help.”
For Betty and Martin Edwards, a desire to help the children and to make people feel welcome at the Institute and in their hometown of Jacksonville motivated them to support the pediatric program. Not only have they helped fund the pediatric recovery room renovation, they’ve also helped fund a Family Fun Night happening this month.
Martin was diagnosed with prostate cancer nine years ago. While he had several treatment options, he credits Betty with finding out about proton therapy. “She was talking to a neighbor who is a doctor at UF Health Jacksonville. He mentioned proton therapy and we looked into it. I became convinced that it would be a good choice for me,” Martin said.
“I have to say that everybody at the Institute was as friendly and hospitable as could be. In most medical settings it’s formal and sterile. This was just the opposite. Everyone was friendly and welcoming and made you feel at home. A relaxed atmosphere,” said Martin. As his treatment progressed Martin said he would go early just to sit and visit with people. He would share information with newcomers about what to expect during treatment and places to go and things to do around town. He wanted to make them feel welcome and became what he called a “mini ambassador” for the Institute.
But what really prompted the Edwards to make a philanthropic gift was Martin’s experience seeing the children who were on treatment. He vividly recalled watching a sedated child holding a teddy bear being wheeled down the hall on a gurney toward the treatment room. “I thought, ‘How unfair is this for this young child to have to go through this? It’s one thing for an older guy like me, but for a young child… .’ Later, I said to my wife, ‘If we ever get a chance to help out with that, we have to do it.’”
Betty said, “As a mother and counselor of children and families I firmly believe that anything that reduces their anxiety helps them feel better. That goes for the child AND the parents. When we heard about Family Fun Night we wanted to support it because it helps families take their minds off being sick, and needing treatment in a strange environment. We want to help families relax and focus on play and sharing experiences with other families facing similar situations.”
If you would like to support the pediatric program or Family Fun Night, contact Director of Development Lindsay Carter-Tidwell at firstname.lastname@example.org or (904) 588-1519.
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The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur. If you would like to send a Letter to the Editor, please click here.
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