Proton Alums’ Generosity Means Family Fun for Our Youngest Patients

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.

For Marjorie and Barry Berg, supporting the children and families is a way to help others and to give back.

Marjorie and Barry Berg
Marjorie and Barry Berg

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.”

Betty and Martin Edwards
Martin and Betty Edwards

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 lcartertidwell@floridaproton.org or (904) 588-1519.

Executive Director Message

 

StuartKlein.pngEven in tough circumstances, such as dealing with cancer, people have the remarkable capacity to adapt. We have a great team of professionals who help patients tap into their inner resilience. For those who move temporarily to Jacksonville for treatment, we provide practical advice such as where to find housing, grocery stores, pharmacies and even barber shops. To help patients ease their anxiety about treatment, we offer tours so they can see where treatment happens and understand what to expect. We have support groups and one-on-one counseling available so people can talk through their concerns and learn coping skills. And we have plenty of opportunities for people to mix and mingle and just forget about cancer for awhile. This aspect of our care is intentional to help make a positive difference in how patients experience proton therapy and in how they use their inner resources to adjust.

 

Stuart L. Klein

Executive Director

Survivor Spotlight - Leon Warshaw

 

UF Health Proton Therapy Prostate Cancer SurvivorOn June 19, 2015, Leon Warshaw was diagnosed with advanced prostate cancer with a Gleason Score of 8. Facing an aggressive, fast-spreading cancer, Leon was determined to find the best treatment option available to him. He began researching treatment options and consulted several doctors, who knew little about proton therapy and all recommended the same thing: hormone therapy and radiation. Nervous about the side effects associated with standard treatments, he focused his research on proton therapy.

“What I read eased my anxiety somewhat, in that it seemed to offer the least amount of side effects but was equal in results to more traditional treatment methods,” said Leon.

It wasn’t long before Leon and his wife arranged a tour of UF Health Proton Therapy Institute. They explored the facility, spoke with staff and had lunch with current patients, who were happy to share their experiences. The warm atmosphere and patient-centered care encouraged them to take the next step.

“There was an anxious waiting period to learn if I had been accepted for treatment,” said Leon. “When the call came, I felt as though I had just won the lottery.”

Six months later, Leon and his wife traveled from their home in Sarasota, Florida, to Jacksonville. With the help of the Patient Services team, they found a condo to rent in Jacksonville for the duration of his treatment. He has fond memories of attending events organized by the Institute for patients such as weekly luncheons and group outings, where he watched in awe as patients opened up, happy and smiling, seemingly forgetting for a moment that they were in a fight for their lives. These experiences helped Leon form a close bond with his fellow patients. They became, as he calls them, friends in the battle.

“I cannot stress enough how much these activities and weekly luncheon events meant to the mental and physical well-being of myself and all of the patients,” said Leon. “Other than the short treatments, it was like being on vacation.”

Leon, a retired retail executive and entrepreneur, is now a member of the Civilian Volunteer Police in Sarasota and recently received an award for lifesaving efforts.

Expansion Project Update

 

Construction is well underway for the new 10,000-sq.-ft., single-room proton therapy gantry and cyclotron. We are making excellent progress and anticipate the construction to be completed next year. The expansion will increase patient capacity by approximately 25 percent, allowing us to bring the benefits of proton therapy to more people.

 

 

Here are some fun facts about the construction:

  • The foundation will rest firmly on 67 concrete piles that are driven into the limestone bedrock several feet below ground.
  • The gantry will have room to rotate when installed, thanks to a 15-foot pit excavated on the construction site.
  • Materials used for construction include more than 172 tons (344,000 lbs.) of rebar and approximately 1,300 cubic yards of concrete – that’s over 130 truckloads of concrete.

We will continue to provide updates as the project moves forward. In the meantime, check out this time-lapse video, taken by the construction crew, of the development so far.

April – Head and Neck Cancer Awareness Month

Dr. Roi Dagan is director of the head and neck program at UF Health Proton Therapy Institute. Watch this video to learn about cancers that occur in the head and neck and how proton therapy can provide excellent treatment while reducing the impact on surrounding healthy organs.

 

Paying it Forward

 

Alumni patient Leon Warshaw, present donation to UF Health Proton Therapy

Alumni patient Leon Warshaw, a prostate cancer survivor, recently presented UF Health Proton Therapy Institute’s For the Children Fund with a $1,000 gift to benefit pediatric cancer patients.

“The pediatric program is nothing short of a miracle for the young children being treated,” said Leon. “The pleasant and comforting personalities of the nurses, technicians and doctors are heartwarming and supportive.”

Leon’s generous gift was made possible by his service with the Sarasota Civilian Volunteer Police. Leon and his Civilian Volunteer Police partner, Demetri Lignos, received the Noah Williams Humanitarian Award for their lifesaving efforts after they discovered a homeless man who was sick and unable to move, lying in the sun alone and unattended for a week following a heart attack. In addition to the award, the Williams family presented Leon with a $1,000 check to be donated to the cause of his choice. He knew immediately that he wanted to use the opportunity to give back to UF Health Proton Therapy Institute.

“The staff at the UF Health Proton Therapy Institute deserves the highest recognition for their professional and effective methods of protecting, treating and supporting young patients,” said Leon. “I hope that my small gift will help give the children joy and support their morale during their treatment period.”


The Institute’s For the Children Fund was created with the mission to provide children with the opportunity to enjoy life, despite their cancer diagnosis. Charitable gifts like Leon’s fund activities, like Family Fun Night, and support two artists-in-residence who guide patients as they create weekly art projects. They also help provide a Child Life Specialist, who uses medical play, preparation and education to promote understanding and help reduce anxiety in pediatric cancer patients.

For Leon, the impact these services had on pediatric patients and their families was undeniable.

“So much thought and care is given to the method of treatments to alleviate fear, pain and discomfort,” said Leon. “I was brought to tears as I observed these young people playing and enjoying their activities while undergoing major treatments. The children showed great strength and enjoyment in all of the attention and care they received.”

Executive Director Message

 

StuartKlein.pngWhat kind of impact can a donor make at our proton therapy center? We see it in the eyes of our pediatric patients who are delighted to return day after day to the newly renovated Jane and Mike McLain Pediatric Recovery Room. We see it in the faces of our patients and caregivers who gather around the art table and concentrate on an art project for a while, not cancer. We see it in the dedication of our clinical research team who document and analyze patient outcomes and publish results. These are a few examples of how the generous philanthropic support of many makes high-quality, compassionate and cutting-edge medicine possible. It is truly an honor to receive these gifts and to see the impact in patient care every day.

 

Stuart L. Klein

Executive Director

Prostate Cancer in Young Men – Long-term Outcomes Study

 

Dr. HoppeMen age 60 and younger treated with proton therapy for prostate cancer at the UF Health Proton Therapy Institute report excellent long-term outcomes related to cure rate and health-related quality of life.

A long-term, prospective clinical study followed 254 low-, intermediate-, and high-risk prostate cancer patients for seven years. Outcomes for cancer recurrence were charted as well as incidence of side effects impacting sexual, urinary and bowel health. Results from the study were published last month in Acta Oncologica.

Median follow-up was 7.1 years and 97.8 percent of men had no evidence of cancer. Cancer-free survival was 99.2 percent and 97.7 percent for low- and intermediate-risk prostate cancer patients respectively.

Potency (erections firm enough for sexual intercourse) was 90 percent at baseline and declined to 72 percent at the first-year follow-up, but declined to only 67 percent at five years. Only two percent of patients developed urinary incontinence requiring pads. The bowel habits mean score declined from a baseline of 96 to 88 at one year, which improved over the following years to 93 at five years.

Men who are 60 years old or younger when diagnosed with prostate cancer have a life expectancy of more than 10 years. The treatment decision – most often surgery or radiation – can significantly impact quality of life depending on the risk of side effects.

“Since similar local control and overall survival have been observed for surgery and radiation, health-related quality of life has emerged as an increasing focus in men considering their treatment options. Several investigations have reported fear of incontinence was a decision-making factor in men, while a more recent study reported that younger men placed more importance on sexual function when choosing treatment options,” said Bradford S. Hoppe, MD, MPH, James E. Lockwood, Jr., Endowed Chair of Proton Therapy at the University of Florida Health Proton Therapy Institute. “Our study provides meaningful information for clinicians and patients to consider when evaluating treatment options that may minimize the risk of erectile dysfunction.”

 

Florida Cancer Center of Excellence Designation Renewed

 

Florida Cancer Center of ExcellenceThe University of Florida Health Cancer Center, including the UF Health Proton Therapy Institute, has once again been recognized as a Cancer Center of Excellence by Governor Rick Scott and the Florida Department of Health.

The UF Health Cancer Center is one of four centers in the state to receive this designation. The UF Health Proton Therapy Institute is the only Cancer Center of Excellence in Jacksonville that treats patients with proton therapy – an advanced form of radiation therapy.

“More than an honor, the Cancer Center of Excellence designation is an important assurance for patients and their families seeking the best possible cancer treatment,” said Stuart Klein, the UF Health Proton Therapy Institute executive director. “Each of our 165 staff members is committed to serving patients with high-quality, compassionate care every day.”

The Cancer Center of Excellence designation was created by the Florida Legislature in 2013 to recognize exemplary patient-centered coordinated care and to help Florida providers be recognized nationally as a preferred destination for quality cancer care — while simultaneously attracting and retaining the best cancer providers in the state, according to the Florida Department of Health website.

The three-year designation is awarded to hospitals and treatment centers that meet strict performance standards in three areas: health care organization, health care team members, and patients and family members. Scores are based on rating standards created by a joint committee of members from the Cancer Control and Research Advisory Council and the Biomedical Research Advisory Council, two advisory groups mandated by the Florida Legislature.

Receiving this designation once again is a testament to the UF Health Cancer Center’s dedication to innovative and collaborative patient-centered care, said Jonathan Licht, MD, the director of the UF Health Cancer Center.

“We continue to strive toward excellence in our mission to save lives and to provide the highest level of care across the cancer spectrum,” said Licht.

COMPPARE Workshop Kicks Off National Prostate Cancer Study

 

COMPPARE Workshop


Researchers, physicians, scientists and patient advocates convened at a workshop on Amelia Island, Fla., to discuss and plan implementation of the national prostate cancer study recently funded by the Patient Centered Outcomes and Research Institute (PCORI). The study, A Prospective Comparative Study of Outcomes with Proton and Photon Radiation in Prostate Cancer (COMPPARE), aims to accrue 3,000 men, 1,500 treated with proton therapy and 1,500 treated with conventional photon (X-ray) radiation.

The meeting established best practices for treatment and patient safety, data gathering protocols, and patient recruitment including an ethnically diverse population. The clinical trial will begin accruing patients from 42 participating clinical settings across the country within the next 12 months.

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About This Newsletter

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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It is easy to stay in touch with us online at floridaproton.org . Look at the top right corner of the homepage for Facebook , Twitter and YouTube icons, click and join us in the social media conversation. Also on the right side of the homepage there is a button for VTOC Patient Portal . Click here to open your secure account, view your records, complete clinical trial questionnaires and communicate with your nurse case manager.

 

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