“They didn’t just come up with a plan, they worked together to make sure they came up with the best plan to meet Ethan's specific needs.”
Ethan Ross had a healthy childhood. Other than a brief trip to the hospital to have his tonsils removed when he was four, Ethan, 21, had avoided any major illnesses or injuries. So, last July, when he first noticed a small lump forming toward the back of his neck, he thought he might just be getting a cold. A month later, when both he and his mother, Michelle Jackson, realized the lump had grown bigger, Michelle took Ethan to his primary care doctor for an exam.
This visit would be the first of many in Ethan’s journey to discover the cause of the ever-growing bulge in his neck. His primary care physician initially diagnosed the lump as a swollen lymph node, gave him an antibiotic, and told him to follow up in two weeks. When Ethan returned, the growth was still there and was slightly larger than before.
"They still didn’t know what it was, but they knew it wasn’t just a swollen lymph node because it was starting to grow," Michelle said.
From there, Ethan was seen by an ear, nose and throat (ENT) doctor who ordered a CT scan, and was later transferred to a local hospital for a biopsy and then an MRI.
Over the six months that Ethan and his mother spent going to different doctors trying to pin down the root cause of the growth, the lump had grown from about the size of a walnut to that of a small grapefruit.
"We were confused because he had been healthy up until this point. And I think not knowing the cause, and the ups and downs of misdiagnosis, it put a lot of strain on Ethan," Michelle said.
"I remember when they did the biopsy, they were like, ‘Oh, we've never seen anything like that before.’ So, it was scary hearing the experts be unsure. It's been somewhat like a roller coaster ride, going through this up and down and not knowing whether this is something minor or major."
In February, they finally got their answer. Ethan was diagnosed with neurofibroma, a rare tumor that forms within a nerve and presents as a lump under the skin. He would have to undergo surgery to have the tumor removed before he would know whether it was malignant or benign. The size of the tumor alone meant this surgery would be difficult to perform, and it was. When doctors at his local hospital attempted the procedure, they were only able to remove roughly half of the tumor tissue before they had to terminate the surgery for fear of Ethan losing too much blood.
Having exhausted all options at their disposal, Ethan’s local doctors recommended he transfer to Penn Medicine.
Providing expert care amid a global pandemic
At Penn, Ethan was paired with Dr. Goldie Kurtz, an Assistant Professor of Clinical Radiation Oncology, who reviewed Ethan's MRI and CT scans and immediately knew she would need to assemble a multidisciplinary team to treat his tumor.
Kurtz called in Dr. Zarina Ali, an Assistant Professor of Neurosurgery at the Pennsylvania Hospital who specializes in peripheral nerve surgery. Together, Kurtz and Ali decided it would be best for Ethan to undergo a second surgery at Penn to remove the tumor tissue that remained.
In her initial review of Ethan’s case, Ali identified several challenges. Ethan’s tumor was located in an area of his neck that, if not carefully resected, could cause permanent damage to blood vessels that feed into the brain; one false move and he could lose motor functions in a major part of his body. There was also the issue of his previous surgery; doctors at his local hospital had already tried to remove the tumor to no avail. Ali wanted to make sure her team got it right. To make matters worse, Ethan’s care journey at Penn began in March, around the same time that the coronavirus pandemic had begun sweeping across the country, severely limiting her team’s ability to meet patients face-to-face.
"Ethan’s surgery required significant preoperative considerations by many specialists," Ali said. "We took several measures to mitigate his surgical risk and provide him with the best treatment option possible, and somehow, we did it in the middle of a pandemic."
Ali arranged to see Ethan via telemedicine and expedited repeat MRI and PET scans, and a repeat biopsy to ensure she had the most accurate and up-to-date images of tumor, its location and size. She conferred with Penn hematology and medical oncology specialist, Dr. Lee Hartner, who also saw patient via telemedicine; and consulted Penn’s multidisciplinary sarcoma tumor board before all parties agreed it was safe and in the best interest of the patient to move forward with the surgery.
All hands were on deck for Ethan’s surgery. Neurosurgical Director of Penn’s Comprehensive Stroke Center, David Kung, performed a preoperative angiogram and embolization to cut off the blood supply to the tumor with hopes of avoiding the excessive bleeding issues Ethan experienced during his first surgery. Then Ali, and Penn Medicine surgeons, Dr. Eric Zager, and Dr. Giorgos Karakousis, worked together to perform the operation.
The surgery was successful. Ali’s team removed nearly all the remaining tumor tissue without any complications, but it was anything but easy.
"This was a very complex tumor and there are very few people who are trained to do this kind of operation," she said. "I am fortunate to have trained with one of the best in the country and my expertise, combined with the expertise of Dr. Zager and our surgical oncologists brought a dimension of thoughtfulness and technical expertise to ensure everything went smoothly."
After months of waiting, Ethan was finally rid of his tumor. A follow-up exam revealed the tumor was, in fact, benign; and a repeat MRI in May showed the tumor had not grown back.
While Ethan still has follow-up appointments ahead to ensure the tumor does not resurface, Michelle says she’s grateful her son found the expert care he needed at Penn.
"Penn was much more comprehensive, even though, because of COVID, almost everything was done by the by phone. Dr. Ali would always call and keep me updated and they made sure I could FaceTime with him since I was not able to be there when he was in recovery," Michelle said.
"The care, the teamwork, even from our first meeting, made me know Ethan was in good hands. They didn’t just come up with a plan, they worked together to make sure they came up with the best plan to meet Ethan's specific needs."