The diagnosis alone stops time. For Emma Lamb’s family, though, the diagnosis of rhabdomyosarcoma (or RMS), a type of soft tissue sarcoma, was devastating. Emma was only 20 months.
Her treatment plan was multi-faceted. The first phase, chemotherapy, was able to be done close to home in the western suburbs. As that progressed, her family and their oncology team at Central DuPage Hospital (CDH) had to decide on the next phase…how to treat the main tumor in her lower abdomen – radiation, surgery, or both. Together they opted to obtain a second opinion from the multidisciplinary Sarcoma Team at Lurie Children’s Hospital of Chicago.
“Everything between Lurie Children’s and our primary care team of Dr. Sharad N. Salvi and Dr. Ammar Hayani was just so seamless,” said Amanda Lamb, Emma’s mother.
With guidance from the primary care team, Emma’s family contacted the Advanced Practice Nurse (APN) who immediately coordinated a dual appointment with both an oncologist and pediatric surgical oncologist.
In the past, while this care was available, it was less streamlined. A patient would typically undergo an initial evaluation by an oncologist, followed by multiple additional referrals to specialists in fields such as orthopedic oncology, head and neck surgery, pediatric surgical oncology, radiation oncology, and fertility preservation. These appointments were often arranged separately, requiring multiple visits to Lurie Children’s Hospital and excruciating delays in obtaining answers.
“Through this new comprehensive program, the team can now offer multidisciplinary care for children and adolescents diagnosed with a sarcoma in a timely and coordinated way,” said Timothy Lautz, MD, pediatric surgical oncologist. “Appointments are made through an oncology APN who then helps the families navigate the next steps. When families are told their child has cancer, they want treatment to start yesterday. This streamlined program helps accelerate the treatment plan.”
Another aspect of this program is richer collaboration. The Sarcoma Team members meet regularly to collectively review patient treatment plans. Care is coordinated between oncologists, surgeons, radiation oncologists, radiologists, nurses and the cancer genetics team. Nothing is done in a silo. There are also weekly multi-specialist clinics, like the one where Emma was first seen. Here patients can be evaluated simultaneously by oncologists and surgeons, who then, in turn, discuss each case with other relevant specialists to reach an optimal recommendation in real time.
In addition to this highly coordinated care, there is also research collaboration, which will ultimately also enhance patient care.
Each child or adolescent’s situation is unique. To address this, “we collectively work with patients and their families to develop an individual customized treatment plan for each child,” said Jeff Rastatter, MD, otolaryngology – head and neck surgeon.
While patients often need chemotherapy, additional treatments vary depending on the individual case. For instance, some may need surgery, others radiation, and still others may need both. Pediatric and adolescent sarcomas, cancers that begin in either the bone or the soft (connective) tissues, are rare in children but do account for approximately 15 percent of cancer diagnosis in patients under 20 years of age. The most common types of pediatric and adolescent sarcoma include osteosarcoma, Ewing sarcoma and RMS among others.
“Although classified as a group, each type of sarcoma responds to different modes of therapy,” said David Walterhouse, MD, Section Head of Oncology, attending physician, and the Richard A. Perritt, MD Professorship in Cancer and Blood Disorders. “That is a key reason it is essential that children receive care at high volume centers with experience and expertise managing all different types of pediatric sarcomas.”
“In Emma’s case, for instance, we determined that complete resection of the tumor was possible,” said Dr. Lautz. “This allowed us to significantly reduce the dose of radiation that she would require, which is extremely important since radiation, especially to the lower abdomen and pelvis can have significant side effects in young children.”
For some families, traveling great distances to reach a high volume center, however, can be a burden. To better accommodate these families, children can have their complex operations at Lurie Children’s and then continue care locally. “For those families, keeping their children closer to home for the majority of their care, such as in Emma’s case, is a great option,” said Dr. Lautz.
In addition to treating the cancer, the Sarcoma Team is able to offer their patients innovative new fertility preservation options.
Improved treatments for cancer give patients the hope of long-term survival. However, many of the treatments that increase survival may cause loss of fertility and hormone function. New technologies are providing possibilities for preserving both.
“Through the multidisciplinary coordinated care with the fertility experts in Lurie Children’s Fertility and Hormone Preservation and Restoration Program, the Sarcoma Team is now able to provide new hope for those undergoing cancer treatment, and minimize the risk of infertility among adult survivors of childhood cancer,” said Barbara Lockart, DNP, APN. “The program offers a comprehensive range of services for pre- and post-pubertal patients.”
Lurie Children’s Fertility and Hormone Preservation and Restoration Program is the only program of its kind in Illinois. In fact, there are no programs like it in Wisconsin, Indiana, Michigan or Iowa either.
“We wanted to explore fertility preservation because both cyclophosphamide, which was part of Emma’s treatment, as well as radiation, were going to hurt Emma’s ovaries,” said Amanda Lamb. “We felt very happy we could do it here because there are only a few places in the country that offer this type of fertility preservation.”
Emma Lamb was able to undergo a procedure called ovarian tissue cryopreservation at the same time as her operation to remove the tumor. It is offered to female patients who are receiving chemotherapy, radiation, or surgery, which have the potential to cause infertility. During this process, one ovary is removed and is then frozen. When the patient is ready to have children, tissue re-implantation is an option. While still in the experimental phase, this treatment has resulted in pregnancies in adult women, and the hope is that technology will also apply to pediatric patients. Fertility preservation options are also available for boys of all ages.
When a child is diagnosed with any cancer, it is a scary and vulnerable time for the entire family. The newly centralized Sarcoma program focuses care in a more streamlined way and supports the family through the entire process.
“When dealing with a cancer diagnosis you are just paralyzed in fear,” said Amanda. “The team members at Lurie Children’s were the hands on our back. Whatever we needed to get done, got done and they guided us through the whole process.”