Every child knows monsters can lurk behind doors, under dark beds or beneath murky seas. But sometimes parents also lie in bed and stare into the void created by a beast in the shadows. They may know the monster’s name, but not how to vanquish it.
For Peter and Eileen Fielding, the foe is a rare endocrine cancer called an adrenocortical tumor. Chicago surgeons recently removed this abnormal growth from their 7-year-old daughter, Lily. The cancer affects glands that produce the body’s hormones. It is diagnosed in just 20 to 25 children annually in the U.S.
“We have the original monster out of her,” Peter says. “But we can’t ensure we have every last cancer cell out of her body. We don’t know whether there’s some piece of that monster still in her, trying to regain footing and start anew. If so, where is it? Will it come back? If so, when? How aggressively? In what organs? Can we go after it again? We don’t know. So we’re in a really insecure place right now.”
Seeking answers to those questions, the Fieldings recently traveled to Memphis, Tennessee. There, they attended the Collaborative Rare Endocrine Tumor Referral Clinic at St. Jude Children’s Research Hospital.
Organized and led by St. Jude oncologist Catherine Lam, MD, the two-day clinic brings patients and families who are treated elsewhere to St. Jude for medical exams, an educational seminar, an in-depth consultation with a panel of experts, and the chance to meet other families with endocrine tumors.
Hosting such a focused clinic allows clinicians to expand their knowledge of these childhood cancers and to assist more children and their physicians.
“It’s a unique opportunity to bring together many different disciplines with expertise and interest in these rare tumors and to offer these special patients a consensus team approach,” Lam says. “Patients and families who may not otherwise have that opportunity can ask questions and hopefully get some answers.”
Exams, advice, support
The Fieldings and three other families traveled to Memphis from as far away as New York and Oklahoma for the June 2017 clinic. This free service is offered to patients who are referred by their physicians. St. Jude provides travel, housing and meals for attendees.
Peter Fielding says he and his wife jumped at the opportunity to attend the clinic.
“St. Jude is the one charity I’ve supported for many years,” he says. “My nephew also received treatment for a brain tumor there. It’s sadly ironic that now we’re turning to St. Jude for guidance.”
The clinic provides a second opinion on topics ranging from diagnosis and therapy to genetics and follow-up care. St. Jude may be able to enroll a child in a clinical trial if one is available and the patient is eligible. Patients in the clinic may also donate tissue samples to the hospital’s Biorepository for use in future research.
The referral clinic is an important part of the hospital’s strategic plan, which calls for the creation of national referral clinics for several rare cancers.
“Advancing cures for these cancers requires a collaborative effort,” explains James R. Downing, MD, St. Jude president and chief executive officer. “Because of their rarity, no institution will see many cases of these tumors. By hosting clinics like this one, we can make headway on pediatric cancers in which progress has not been made.”
In search of answers
The hospital has a long history of endocrine cancer research. Nearly 30 years ago, St. Jude developed the International Pediatric Adrenocortical Tumor Registry to provide a central repository for data and tumor samples.
“When we began studying this disease, oncology textbooks included about one paragraph on it,” recalls Raul Ribeiro, MD, Oncology. “Nobody else was interested in developing protocols because of the rarity of this tumor.”
Today, the registry includes samples and data from nearly 400 patients. Scientists and clinicians use this resource to better understand adrenocortical tumors, about which little is known.
Two of the clinic’s leaders—Alberto Pappo, MD, director of the Solid Tumor Division; and Carlos Rodriguez-Galindo, MD, executive vice president and chair of Global Pediatric Medicine—have headed the Rare Tumors Committee for the Children’s Oncology Group, a National Cancer Institute–supported clinical trials group. In addition to treating children at the hospital in Memphis, St. Jude experts regularly consult on endocrine cases throughout the U.S. and around the world.
“Our oncology team in Chicago has seen very few cases of this particular type of cancer,” Peter Fielding says. “Learning about this ‘on the job’ is not an option for us….We need a team with demonstrable first-hand knowledge and expertise of this beast.”
“St. Jude has some of the most knowledgeable people in the world on this cancer,” he continues. “The answers to some of our questions don’t even exist right now. But the clinic provided us with more clarity and a better understanding of what we should do next.”
One problem, many perspectives
Clinic participants undergo a full day of testing and consultations, followed by an educational seminar. The following day, each family meets with a panel of specialists to discuss their child’s case.
Ten-year-old Hailey Coniber traveled from New York to attend the clinic. Her mom says the panel discussion was especially helpful. The family obtained insights from a group that included specialists in oncology, endocrinology, pathology, radiology and nuclear medicine, surgery, nursing, pharmacy, and cancer predisposition experts. Every person in the room focused exclusively on Hailey and her challenges.
“We weren’t quite sure what to expect when we arrived at St. Jude,” Melissa Coniber says. “But the fact that we got to meet with researchers who were working on this particular cancer was a good benefit for us. Our meeting with the entire team—having everybody together at the same time—was the biggest asset.”
Support for the journey ahead
The Fielding family returned to Chicago armed with information and buoyed by new relationships with patient families and medical experts. The couple say they are comforted to know the St. Jude team is poised to assist and offer counsel if new medical questions arise.
“It felt good to be at an organization that was so knowledgeable about a disease for which there’s very little knowledge available,” Eileen says. “I was nervous going in, but I was overwhelmed by the goodness of every single person we met. When you’re in dire straits, in need of information and so upset, it’s comforting to meet people who treat you with kindness and understand what you’re going through. I really appreciated that.”
For information about future Rare Endocrine Tumor Referral Clinics, call (901) 595-6110 or email firstname.lastname@example.org.
From Promise, Autumn 2017