Special Programs Enhance Pediatric Cancer Care at UCSF

By Abigail Mortimore

UCSF Survivors of Childhood Cancer Program receives an official check from 2011's Swim Across America fundraiser, the program's primary funding source. This year’s fundraiser, in which former Olympians and cancer survivors swim 1.5 miles from the Golden Gate Bridge to Crissy Field in San Francisco, is taking place Saturday, Sept. 29. Click here for event details.

September is National Childhood Cancer Awareness month, encouraging awareness and affirmation to the commitment of fighting pediatric cancer.

The UCSF Benioff Children’s Hospital not only is one of the nation’s best children’s hospitals, but it’s also a leader in the treatment of cancer and blood diseases. UCSF recognizes that pediatric cancer differs from adult cancer in the way it emerges and develops and ensures the cancer programs are designed specifically for its youngest patients.

About 12,060 children under the age of 15 will be diagnosed with cancer in the United States this year, according to the American Cancer Society. Thanks to recent treatment advances, more than 80 percent of children with cancer now survive five years or more. While survival rates vary depending on the type of cancer and other factors, this is a huge increase since the mid-1970s when the five-year survival rate was less than 60 percent.

With cancer treatment programs becoming more comprehensive, there now are more resources to help support the overall treatment process for patients. UCSF Benioff Children’s Hospital has created special programs to supplement the medical services pediatric cancer patients receive.  

Survivors of Childhood Cancer

Given the growing population of pediatric cancer survivors, the UCSF Survivors of Childhood Cancer Program is dedicated to helping them maintain optimal physical and emotional health for the rest of their lives.

“It is estimated that one in 500 young adults in the United States is a survivor of pediatric cancer,” said Robert Goldsby, MD, a UCSF pediatric oncologist and medical director of the Survivors of Childhood Cancer Program. “It is essential that we provide appropriate and comprehensive care addressing long-term consequences of therapy for cancer survivors.”

The Survivors Clinic consults patients on the impact of their cancer treatments in their childhood and their subsequent long-term health care needs in adulthood. Pediatric cancer survivors may face a host of issues including fertility problems, problems accessing health care and obtaining insurance, secondary cancers, psychological and emotional problems, treatment-related organ dysfunction, just to name a few.

An example of the UCSF Survivors Clinic health passport provided to pediatric cancer survivor patients. The passport serves as handy reference of personalized medical history.

Patients make their initial visit to the Survivors Clinic after being at least two years off therapy and then every five years subsequently. More than 400 visits have been held in the clinic.

A unique element is a pocket-sized “health passport” that contains an individualized treatment summary and follow-up care plan. Patients receive the passport at the time of their initial visit so they can have a concise summary of their medical information on hand at all times. Information is updated with each subsequent visit to the clinic.

“Once you go through treatment, you think you are done but there is so much follow-up work,” said Rachael Donaldson, 27, who first attended the clinic four years ago after extensive treatment for stage IV sarcoma. “The Survivors Clinic helped me to be aware of the importance of what to look out for later in life. So if anything feels weird or I notice anything different, I can use references they have given me to know what to be concerned about and when to contact the doctors.”

Donaldson is now a pediatric nurse with plans to eventually focus on oncology. She credits the success of the clinic to the UCSF staff, particularly Goldsby, whom she says she would still want as her oncologist if she ever had a reoccurrence — even though now she is in her late 20s.

Fresh off of his first visit this month, Jason Thornton, 24, also recognizes the clinic’s importance.

“It’s a great way to inform young survivors about treatments and procedures that they went through,” said Thornton who was diagnosed at age 17 with stage IV malignant germ cell tumor and again at 18 with non-germ cell malignant sarcoma.  “I believe for some of the younger patients who didn’t really understand or probably don’t remember much because they were treated at such a young age, it’s a great way to educate them now [that they are older].”

The clinic and overall program is funded primarily from monies raised at the annual Swim Across America event, where former Olympians and cancer survivors swim 1.5 miles from the Golden Gate Bridge to Crissy Field in San Francisco. This year’s event is taking place this Saturday, Sept. 29, and Thornton will share his personal story and clinic experience with attendees at the post-swim celebration.

Compass Care Program

UCSF’s Compass Care Program is one of the region’s first palliative care programs for children, focusing on maximizing quality of life for gravely and chronically ill infants and children all while providing cutting-edge medical care and support.

Initiated as a hospital-wide grassroots effort in 2000, it has since grown into a nationally recognized interdisciplinary program, recognizing the central role of family in the care of patients and works to help them cope with having a critically ill child who may need prolonged or repeated hospitalizations. A specialized team of doctors, nurses, social workers, child life specialists, spiritual care staff and pharmacists provide expert clinical care, education and guidance around difficult medical issues and decision-making.

Recent updates to the Comfort Care suites at UCSF Benioff Children's Hospital will help provide pediatric cancer patients and their families a more comfortable environment during their treatment.

During pivotal, stressful times during cancer treatment, patients on the pediatric oncology unit often stay in the Comfort Care suites — larger, more private rooms located within the children’s hospital. Recently, updates to two of these were completed — thanks to funding from Go4theGoal, a pediatric cancer charity — adding new sleeper sofas, cheerful wall murals and furnishings, softer lighting and new wall colors.

“These room improvements allowed us to give our patients and their families an even more comfortable, warm and private environment to be together during a very stressful time,” said UCSF Compass Care Program Coordinator Robin Kramer.

Ongoing Research

In addition to these programs and more, ground-breaking research around pediatric oncology continues at UCSF.

Recently, Jean Nakamura, MD, a UCSF pediatric oncologist received a grant from St. Baldricks, a charity dedicated to raising money for childhood cancer research, for her research aiming to protect the long-term health of childhood cancer survivors by understanding who is at risk for developing therapy-associated malignancies, why these malignancies develop and how to prevent them.

Nakamura is using sophisticated genetic analyses to find the most important gene mutations that occur in therapy-induced cancers and then studying how these mutations work to produce a second cancer. This type of analysis has not been done before, she said.

“We are excited about the possibility of making major progress in an area that hasn’t seen the kind of advances that keep childhood cancer survivors healthy,” Nakamura said.