Maya was first diagnosed with cancer in 2006 at the age of 2 at a routine well visit with CHOP physician Kathryn Limmer, MD. Maya lost a kidney during surgery to remove the Wilms tumor, but did well through treatment and entered CHOP’s Survivorship Program. Then in January 2015, Maya’s eyes appeared jaundiced. The diagnosis: a rare Ewing sarcoma in her pancreas (the tumor usually shows up in bones). Maya began a second round of chemotherapy and then radiation, which she finished at the beginning of 2016.
Between the 2 diagnoses, Maya’s family had moved, and she began seeing CHOP pediatrician JoAnne Woehling, MD, FAAP, at CHOP’s primary care location in Haverford, Pa. Woehling has another patient who was recently diagnosed with cancer, and so can attest to the coordination of care between the primary care physician and CHOP’s Oncology team.
If a PCP discovers something that could indicate cancer, “We will gently begin to prepare the family for a series of diagnostic next steps. Then we’re going to make a call to CHOP Oncology,” says Woehling. Depending on the clinical situation, a CHOP oncologist at the Main Campus or at the CHOP Care Network Specialty Care and Surgery Centers in King of Prussia and Voorhees, can see new patients the same day or the next day. Afterward, the PCP will get a call explaining what was found and what will happen next.
“Our CHOP pediatrician has gotten information about everything Maya has gone through,” says Maya’s mother, Stacy. “Our pediatrician would call to check in after Maya had a procedure.” Woehling had the information to make those phone calls because of her access to Maya’s electronic medical record: “I can pull up a ‘notes’ section to see every entry made by anyone — a child life specialist, a nurse, a doctor. It’s all right there. I know what’s happening, and if something critical is unfolding, I’ll call the family.”
Non-CHOP physicians can also use the CHOP portal. “The PMD can check that will, and it’s available in real time,” explains Maya’s oncologist, Julie W. Stern, MD, who as the director of Outreach Services with CHOP’s Division of Oncology regularly visits with referring physicians. Stern adds that the division sends letters with clinical updates to all referring physicians.
When a PCP is caring for someone who’s gone through treatment for cancer, the oncologist remains in the picture. “If something happens with the patient, we can ask the common questions, but the answers need to be interpreted in the context of the cancer history,” says Woehling. “I always consult with the oncologist.” She describes it as the PCP, the oncologist, and the parents “working in triplicate, putting together what we know about this child.” The PCP is aware of what’s in the community, such as influenza, parvovirus, or rotavirus. The oncologist understands the child’s immune system. The parents know how the child looks and acts day to day and is sensitive to small changes.
For her part, Maya went to 4 weeks of camp this summer, and for years she’s been a powerhouse fundraiser for Alex’s Lemonade Stand Foundation. To date, she’s raised more than $380,000 for cancer research.