Rare Duodenal Cancer with Multiple Liver Metastases: How to Defy the Odds (Part 1) | Patient Story
This article is an official interview by the Panda Group with Mr. Xiao Gao from the Hepatobiliary & Pancreatic Support Group, detailing his mother’s late-stage treatment journey for duodenal adenocarcinoma with multiple liver metastases. After neoadjuvant therapy, she became eligible for surgery. Despite postoperative complications, she has recovered and is currently in the post-treatment observation phase (over six months post-surgery, in good condition).
————— Author: Guangguang
Editor: Xianning
「 I. Patient Basic Information 」
Mr. Xiao Gao’s family is from Harbin. At 67, his mother closely resembles the typical housewives portrayed in many Northeastern Chinese TV dramas: straightforward, independent, optimistic, and energetic in everything she does, always full of passion and hope for life. Although she did not receive higher education, most of her relatives work in healthcare, so she has always maintained a good habit of regular health check-ups. Her routine exams in November 2023 (including a non-contrast abdominal CT and gastroscopy/colonoscopy) showed no abnormalities.
However, just one year later, during her March 2024 check-up, she was diagnosed with duodenal adenocarcinoma with multiple liver metastases. Initial assessment indicated she was not a candidate for surgery.
「 II. Solar Birthday, Accidental Diagnosis 」
March 7, 2024, was his mother’s solar calendar birthday. That evening, when Mr. Xiao returned from his night shift, his mother excitedly told him about an ultrasound specialist she knew who had been rehired as the director of the ultrasound department at a community clinic after retirement. The clinic had just acquired a new ultrasound machine, and she wanted to visit and support her friend.
The next day, his father accompanied her. They left home cheerfully but returned in quiet silence. When Mr. Xiao got home from work, he found his parents sitting silently, sighing. Puzzled, he asked what happened. His father explained first: “There might be an issue with your mom. Today’s ultrasound at the community clinic found a 4.7 cm mass on her liver. The doctor couldn’t confirm anything and advised us to get a follow-up at a higher-level hospital.”
Although the clinic’s equipment was new, the lack of a definitive diagnosis from a specialist left the family deeply anxious. Mr. Xiao immediately booked a night ultrasound appointment at a local tertiary hospital, and the family rushed there. Through a cousin who works in healthcare, they arranged for the cousin’s classmate to perform the scan. Thanks to this connection, the doctor conducted a thorough examination and soon realized the situation was more serious than expected: besides the large lesion noted by the clinic, several smaller ones were also found. Given ultrasound’s limitation in detecting lesions under 1 cm, the doctor suspected there might be more. The ultrasound specialist recommended visiting a specialized oncology hospital for a contrast-enhanced MRI or a Primovist-enhanced MRI to clarify the liver condition.
Holding back from the sudden, heavy blow, the family returned home in silence. Though anxious, Mr. Xiao stayed rational and immediately booked the earliest available appointment for the next morning at the Hepatobiliary Surgery Department of the First Affiliated Hospital of Harbin Medical University. At dawn, without delay, the family arrived early at the clinic to wait.
The consulting doctor was highly professional. After learning about his mother’s basic condition and noting her lack of smoking or drinking habits, as well as no prior liver diseases like hepatitis or cirrhosis, the doctor reassured them that in such cases, most tumors are likely benign, such as hemangiomas, so they shouldn’t worry too much. However, given the suspicion, he still recommended scheduling a contrast-enhanced liver MRI, tumor marker tests, and routine blood and liver/kidney function tests.
The blood test results came back the fastest. By noon, shortly after the morning draw, the tumor marker results were ready. Mr. Xiao wasn’t very familiar with tumor markers at the time, but seeing the arrows pointing high and low, he knew the situation wasn’t good: while CEA and AFP were normal, his mother’s CA199 level was as high as 736.
The contrast-enhanced MRI was scheduled for that afternoon, and the imaging report came out by noon the next day. “I remember the conclusion clearly: a space-occupying lesion in the course of the middle hepatic vein, suspected malignant, highly likely cholangiocarcinoma. Regarding metastasis, the report showed multiple abnormal signal nodules in liver segments S8, S2, and S5, suggesting possible metastasis,” Mr. Xiao recalled calmly.
Once the tumor marker and imaging results were out, Mr. Xiao immediately returned to the doctor’s office. After reviewing the results, the doctor, unsurprisingly, stated that with metastasis already present, surgery was no longer an option, and recommended consulting the medical oncology department.
Since most of his family works in healthcare, Mr. Xiao knew that although the local Harbin Medical University Cancer Hospital had an MDT team, it was still relatively immature. Doctors there generally wouldn’t recommend other specialists if they couldn’t make a diagnosis themselves; it was up to the family to seek out the right doctor.
「 III. Rushing Around, Difficult Consultations 」
“I was extremely anxious back then, unable to sleep at night, constantly searching online. On one hand, I wanted to understand the next treatment steps; on the other, I sought some psychological comfort by looking for positive cases,” Mr. Xiao recalled.
Before visiting the medical oncology department, Mr. Xiao thought carefully. This time, he decided not to go unprepared, unlike his previous surgical consultation. He spent about a day and leveraged many connections to find out which local oncologist specialized in treating cholangiocarcinoma or had extensive experience in chemotherapy and radiotherapy.
His efforts paid off. He finally secured an appointment with Dr. Zhang, who met all his criteria and would later play a crucial role in his mother’s conversion therapy.
At 7 a.m. the next day, Mr. Xiao brought all his mother’s reports and imaging to Dr. Zhang’s office. Unfortunately, Dr. Zhang couldn’t definitively confirm whether it was hepatobiliary cholangiocarcinoma. However, he told Mr. Xiao that if it were intrahepatic cholangiocarcinoma, he could rest assured, as the hospital had two Phase III clinical trials. If his mother met the eligibility criteria, joining the trial would significantly reduce the financial burden.
After hearing the doctor’s explanation and trial introduction, Mr. Xiao immediately understood the implication: from a palliative care perspective, joining the trial would not only ease financial strain but also help maintain his mother’s quality of life and extend survival for a period. He suddenly felt the day’s奔波 (rushing around) wasn’t in vain; at least, he found some comfort.
However, Mr. Xiao didn’t dare to agree immediately. His mother, who had always been optimistic and independent, was very clear about her condition. Therefore, any decision regarding treatment or trial enrollment had to be discussed with his family, especially his mother herself. The doctor urged him to make a decision quickly.
Although they needed to discuss it as a family, Mr. Xiao’s father had a completely opposite personality: indecisive, prone to pessimism, and always expecting the worst. Moreover, he was a cancer patient himself, diagnosed with a small intestinal stromal tumor in 2019, and had been taking Gleevec post-surgery. His attitude toward his own illness was “taking it one day at a time,” so he struggled to accept his wife’s diagnosis and was constantly worried. Considering this, Mr. Xiao decided to share the doctor’s advice with his mother and his wife.
After hearing Mr. Xiao’s account, his mother basically agreed to join the trial. However, she suddenly requested a PET-CT scan, which completely surprised him. He didn’t ask how she knew about it, only wondering why she suddenly wanted a test the doctors hadn’t even mentioned, especially since intrahepatic cholangiocarcinoma was already suspected. His mother explained she wanted to check if there were metastases elsewhere besides the liver. If the primary tumor was in the pancreas, or if it had spread to the bones, she might decline treatment. In her view, if the disease was already terminal, treatment would only drain both health and finances. While currently asymptomatic, she preferred spending more time with family rather than suffering in the hospital. However, to confirm metastasis, a PET-CT was necessary, which is expensive and fully out-of-pocket.
Respecting his mother’s wishes, Mr. Xiao returned to the hospital that afternoon, ordered the PET-CT, and used his connections to schedule it for the earliest possible date. After the scan, the PET-CT report indicated abnormal SUV values in the soft tissue at the descending duodenal papilla, suggesting primary duodenal cancer with liver metastasis, while ruling out metastases elsewhere (e.g., bones, supraclavicular lymph nodes). This contradicted the earlier contrast-enhanced MRI findings. Mr. Xiao immediately decided to consult the oncologist again.
「 IV. Pathological Biopsy, Final Diagnosis 」
After comparing the MRI and PET-CT results, Dr. Zhang immediately recommended obtaining a pathological diagnosis. He specified that two biopsies were needed: a liver puncture biopsy and a tissue sample via gastroscopy/colonoscopy. The next day, Mr. Xiao scheduled another endoscopy for his mother.
During the endoscopy, Dr. Zhang specifically called the endoscopy room, instructing the operator to carefully examine the duodenum, as a tumor might be present, and to try their best to obtain a biopsy. The endoscopist wasn’t entirely confident, as they weren’t sure how deep to go; if the lesion was near the horizontal part, it might be hard to reach. Fortunately, both biopsies were successfully obtained.
Both the liver biopsy and endoscopic biopsy indicated adenocarcinoma. Dr. Zhang ordered immunohistochemistry (IHC). The final results were consistent with colorectal cancer liver metastasis (subsequent genetic testing showed microsatellite stability, ruling out immunotherapy). Thus, Mr. Xiao’s mother was officially diagnosed with primary duodenal cancer with multiple liver metastases.
「 V. Phased Breakthroughs, Step by Step 」
The clear pathology changed the original plan to join the intrahepatic cholangiocarcinoma clinical trial. Before discussing the next treatment steps with the oncologist, Mr. Xiao actually felt a slight sense of relief. While researching intrahepatic cholangiocarcinoma, he learned its prognosis was generally poor. “I figured duodenal cancer is similar to colorectal cancer, and online data shows colorectal cancer has a much better prognosis,” Mr. Xiao said with a smile.
However, his wishful thinking was quickly shattered by the doctor. When Mr. Xiao showed the pathology report to the oncologist and shared his online research on prognosis, the doctor smiled and asked if he had also looked up survival rates or prognostic data specifically for duodenal cancer.
Mr. Xiao honestly admitted he hadn’t found any. The doctor chuckled and explained the reason: duodenal lesions account for only 0.6% of gastrointestinal diseases, so the medical community has made little substantial progress on it in recent years, and there are no drugs specifically targeting duodenal cancer.
This cold splash of reality left Mr. Xiao deeply chilled. Calming his already frantic mind, he anxiously asked the doctor what the next treatment steps would be without targeted drugs.
After a moment of thought, Dr. Zhang calmly suggested they could only try treating the duodenal cancer as if it were colorectal cancer, using a first-line colorectal cancer regimen. Given his mother’s microsatellite stability, immunotherapy would likely offer little benefit. However, to actively treat and maximize survival, Dr. Zhang proposed a regimen of capecitabine + oxaliplatin (two-drug chemotherapy) + bevacizumab (targeted therapy) + sintilimab (immunotherapy) for five cycles before reassessment. (Due to microsatellite stability, immunotherapy was used empirically and fully out-of-pocket.)
「 VI. Joining the Panda Group, Securing a Surgical Opportunity 」
Soon, Mr. Xiao’s mother began chemotherapy. However, after the first cycle, she experienced significant side effects. Anxious, Mr. Xiao constantly searched online for management strategies. Around this time, he followed a fellow patient from Shandong with colon cancer and liver metastases on Toutiao. This patient, also undergoing chemotherapy, suggested Mr. Xiao apply to join the "Panda and Friends" patient support group, which offered abundant professional resources and a community of peers with similar experiences for mutual support.
Intrigued, Mr. Xiao wanted to see if the group was as good as the Shandong patient claimed. However, joining required submitting patient records for review, which piqued his curiosity even more: what kind of group was so strict? Looking back, Mr. Xiao said the strictness had its merits, which is exactly why he later benefited from it.
After joining, the pinned post was Director Xiao Han’s “Beijing Middle-Aged Cancer Battle Diary.” Reading it in one sitting, Mr. Xiao’s heart surged with emotion. “I deeply related to it because he wrote about his wife. She initially had no surgical option either, but after fighting for it, she ended up having her duodenum and liver resected. I realized that if surgery were possible, my mother would need similar resections in roughly the same areas,” Mr. Xiao said excitedly.
Mr. Xiao said his mother’s treatment path closely followed Director Xiao Han’s family’s journey. Previously, he had no concept of conversion therapy. It was only after reading this story that he learned preoperative chemotherapy is called neoadjuvant therapy. Knowing Director Xiao’s wife secured surgery through neoadjuvant conversion therapy, Mr. Xiao silently decided they would take the same path. But could his mother succeed? Success would require an excellent response to the initial neoadjuvant therapy to even have a chance.
「 VII. Treatment Effective, Surgical Evaluation 」
As his mother completed cycle after cycle of chemotherapy, Mr. Xiao, who had long hoped for surgery, didn’t discuss it with the attending physician yet. Instead, he actively arranged for tumor marker tests and imaging. By the fourth assessment, he finally saw hope for surgery: imaging after the fourth cycle showed the tumor shrinking from 4.7 cm to 3.2 cm, and CA199 dropped below 100. The empirically chosen chemotherapy regimen not only worked but was highly effective! This result instantly uplifted Mr. Xiao, his mother, and his constantly worried father.
Mr. Xiao reasoned that in this situation, his mother’s condition was quite similar to Director Xiao Han’s wife’s. Why not give himself and his mother a chance to seek a surgical evaluation at a major hospital in Beijing, Shanghai, or Guangzhou?
After joining the Panda Group and reading Director Xiao Han’s article, Mr. Xiao constantly searched online for surgical information during his mother’s chemotherapy. The information cocoon effect of the big data era followed: all his social media feeds became flooded with surgical videos.
Thanks to this, Mr. Xiao accidentally came across a video of Director Wang Hongguang from the Cancer Hospital and Director Lin Guole from Peking Union Medical College Hospital performing a novel surgery for colorectal liver metastasis. In the video, Director Wang introduced his “unique technique”—laparoscopic ultrasound-guided indocyanine green (ICG) fluorescence staining. “Initially, I wasn’t very interested in this technique, but when he explained why it was necessary, he said the goal of surgery is radical cure, not just tumor shrinkage or debulking. What did he mean? He continued to explain that his laparoscopic ultrasound probe goes inside the abdominal cavity to scan the liver, detecting lesions invisible to the naked eye, standard ultrasound, or MRI. After injecting the fluorescent dye, it accurately identifies the tumor margins, ensuring you don’t cut too much or too little, thus preserving sufficient liver volume,” Mr. Xiao explained fluently.
Following Director Wang Hongguang’s social media account felt like grasping the last straw in a storm for Mr. Xiao. He frequently watched every one of his videos, though most weren’t closely related to duodenectomy. Until one day, Director Wang finally released a video specifically detailing the surgical risks of pancreaticoduodenectomy. From it, Mr. Xiao learned about the risks: pancreaticoduodenectomy (Whipple procedure) is known as one of the largest abdominal surgeries, often called the “Mount Everest of surgery,” with literature reporting a perioperative mortality rate as high as 3%.
“I actually already knew all this, but what sentence convinced me he might be the right surgeon for my mother? He said he is a doctor who reveres surgical skill; as long as it’s technically feasible, there’s no surgery he can’t perform.”
“But just saying that isn’t enough. He also had concerns. Later, he posted a separate video stating that patients and doctors should be comrades in the same trench, with disease as our common enemy. What did he really mean? Surgery has both successes and failures. We can’t be friends only if it succeeds, and enemies if it fails. Doctors can’t bear all the risk alone; as a patient, you must also have the courage to take risks. We must face it together.”
Mr. Xiao realized he was exactly the type of family member Director Wang described: one willing to take risks and fight for a chance.
Therefore, Mr. Xiao felt it was imperative to meet Director Wang Hongguang in person to evaluate his mother for surgery.
To protect patient privacy, names used in this article are pseudonyms. Images containing patient portraits are used with authorization and may not be reproduced without permission.
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