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One Patient’s Needs Sparks New Surgical Protocol

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Ever wonder what you might do if you found yourself diagnosed with a disease and your doctors didn’t have a process in place to fully treat it? Ever think about what happens behind the scenes in a hospital to prepare for a new surgical procedure? While these are probably not thoughts that pop into anyone’s head as their mind wanders off, these are exactly the kinds of questions that recently came up for Penn patient, Julie Hackett.  

“Julie came to us with Perihilar Cholangiocarcinoma (PHC), or cancer of the bile ducts in the liver, which historically had been difficult to treat and patients generally had poor outcomes,” said Maarouf Hoteit, MD, an assistant professor of Gastroenterology. “Thirty-plus years ago clinicians tried to use liver transplantation as a treatment, but the outcomes were so poor that it basically was dropped as a strategy. There was a protocol developed in Minnesota that could extend the use of liver transplantation for select patients with this type of cancer.”

Hoteit added that the treatment process is quite intensive, particularly for this very sick group of patients. Treatment involves chemotherapy and radiation, followed by what’s called a staging operation, and finally the transplant surgery. Patients often develop infections and worsening liver function related to bile duct damage from chemotherapy and radiation, which means they then have to undergo a more technically challenging transplant procedure due to the scarring in the abdomen. The radiation causes the tissues to become scarred and tough, which makes the transplant procedure more difficult. Performing a liver transplant in this scenario requires significant medical and surgical expertise.

Julie had been a Penn Medicine patient for about four years, receiving treatment for primary sclerosing cholangitis (PSC), a form of chronic liver disease. She was diagnosed with perihilar cholangiocarcinoma, a known complication of PSC, in April 2017. Since Hoteit and his team knew Julie’s tumor could be cured with the protocol, the team worked with Julie to see if it would be possible for her to travel to Minnesota for her transplant.  

“That was not really an option for me,” Hackett says. “I couldn’t fly back and forth, stay out there for an extended period, and take so much time from my job to make the trips.”

Fortunately for Julie, all of the resources and experience to replicate the evidence-based protocol were already available at Penn; the team just had to put the pieces together, which they – and the patient – were more than confident they could do successfully.

“The whole time, I sort of felt like I was their cheerleader,” said Julie. “I never had any doubts about their ability, and I just kept telling the doctors that they could do it, and that I was OK with being the first.”

The leaders of the liver transplant program, Raj Reddy, MD, medical director for Liver Transplantation, Abraham Shaked, MD, PhD, director of the Penn Transplant Institute, and Kim Olthoff, MD, chief of Transplant Surgery, were not only on board with the idea, but were instrumental in providing resources and starting the process on the ground at Penn. The leaders of the liver transplant program, Raj Reddy, MD, medical director for Liver Transplantation, Abraham Shaked, MD, PhD, director of the Penn Transplant Institute, and Kim Olthoff, MD, chief of Transplant Surgery, were not only on board with the idea, but were instrumental in providing resources and starting the process on the ground at Penn. The team just had to coordinate and get the program up and running, which would mean educating the medical and surgical teams, coordinating with the United Network for Organ Sharing (UNOS) for protocol approval, talking with the patient about what it means to be the first, and creating plans for pre-and post-operative care.

“Our team created our own program and protocol based on scientific evidence that has shown a benefit to patients so that we could continue Julie’s treatment at Penn and perform her transplant,” Hoteit said. The protocol was approved by the UNOS, the national organization that oversees all organ allocation and transplantation in the United States.

As a patient nears transplantation, a “staging operation” usually takes place for the surgeon to examine the area around the liver and collect lymph nodes to be sure that there is no cancer in the tissue outside the liver. If all is clear, the patient is able to proceed to transplant surgery.

“Typically the staging operation is done before the transplant. However, if the patient is too sick to withstand two surgeries, as was the case with Julie, we have only one shot,” Hoteit said. “In this case, the surgical team has to sample the lymph nodes and check the surrounding area for disease at the time of the transplant surgery to determine if they can move forward and finish the transplantation.”

The uncertainty weighed on Julie. “Going into it, I didn’t know if I would wake up from the anesthesia having had a transplant, or if I would wake up to find that the disease had spread and they couldn’t go through with it,” she said. 

After six hours, she woke up with a new liver. Now, two months after the surgery, she is doing very well. The team plans to follow Julie at least for the next five years to monitor for PHC recurrence and standard post-transplant follow up. “The team said as long as I live close by, they want to keep seeing me forever,” she said, laughing. But she’s OK with that: in fact, she has even encouraged the team to publish a paper about her case.

“This is the first time I’ve felt like me since at least 2014, so I really want to get the word out about how they’ve helped me,” Julie said. “Having had such a negative health experience, I can say that the process and the people here was nothing but positive. In fact, I think I feel better now than I ever have.”


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