Accompanying My Mother Through Late-Stage Cholangiocarcinoma Treatment at a County Hospital (Multiple Metastases to Neck and Lungs) | Patient Story

Shiner’s mother was diagnosed with late-stage cholangiocarcinoma on November 18, 2024 (primary in the bile duct, with metastases to the neck, lungs, and other sites). Initially influenced by family misconceptions and a cousin’s advice, they consulted a TCM practitioner in Yantai, Shandong, and spent over 10,000 RMB on herbal medicine, which led to adverse reactions such as jaundice and biliary obstruction. Since the day of his mother’s diagnosis, Shiner has been continuously searching the internet for relevant treatment experiences.

Author | Guangguang
Editor | Xianning
Reviewer | Guangguang

「 1. The Unassuming 'Soybean-Sized' Lump on the Neck 」

Shiner’s mother’s current life stage perfectly aligns with the internet meme "60 is the age to strive": to save money for her divorced younger son’s (Shiner’s brother) wedding, the 60-year-old willingly left her hometown to work hard in a big city.

By mid-November, Zhejiang had already shed its summer heat and humidity. But for Shiner’s frugal mother, regardless of the season, a refreshing hot shower after work remained the quickest, nearly zero-cost way to wash away the day’s fatigue—until she felt a soybean-sized lump on her neck while bathing. Instead of falling asleep as usual, she lay awake all night.

To avoid worrying her children, Shiner’s mother chose to visit a nearby hospital alone. The doctor suspected it might not be benign and immediately arranged a fine-needle aspiration biopsy of the neck mass.

"My mom called me, hesitantly asking me to accompany her for a check-up. I had a bad feeling, but she downplayed it, saying it was just a cyst. In reality, the biopsy results were already out, and she knew it was malignant. That’s why she called me."

「 2. Late-Stage Cholangiocarcinoma with Multiple Metastases 」

At the time, Shiner’s father was working in Fujian, and his siblings were in distant provinces. Shiner, living in a different city in Zhejiang, immediately rushed to his mother’s side and accompanied her to a central hospital in Zhejiang for consultation.

After reviewing the biopsy report, the doctor recommended a PET/CT scan to clarify the situation. During the trip, Shiner still held onto a sliver of hope, thinking a malignant lump the size of a soybean couldn’t be too serious, especially since his mother ate and slept well and had a cheerful personality, showing no signs of illness.

It wasn’t until he saw the words "late-stage cholangiocarcinoma" on the report that Shiner realized there are rarely such things as lucky breaks in this world. Every seemingly insignificant "hint" in daily life might actually be a final "warning": On November 18, 2024, his mother was diagnosed with late-stage cancer. The primary tumor was in the bile duct, and it had already metastasized to the neck, lungs, and other areas, indicating a highly aggressive malignancy.

「 3. The 'Mom Protection Squad' & 'The Whole Family' 」

After a brief moment of despair, Shiner began to think. Given the shocking diagnosis, he initially chose to hide the truth from his mother to protect her from emotional distress. However, he believed his siblings had the right to know and needed their help to figure out how to save their mother.

He quickly created a WeChat group named "Mom Protection Squad" with his brother and sister, sharing the test results. Simultaneously, he created a second group called "The Whole Family," adding his parents and siblings.

"Our family is a bit different. The five of us live and work in five different places, and my siblings and I rarely keep in touch. This was the first time we created a group chat, and we actually made two different ones."

Although they weren’t particularly close before, Shiner realized how tightly a family can bond when a parent falls ill. He, his brother, and his sister quickly reached a consensus: unite all available resources, do everything possible to save their mother, and never give up.

「 4. The 10,000 RMB Herbal Medicine from an 'Acquaintance' Doctor 」

Shiner’s father has always been a dominant figure. In his eyes, the most outstanding younger relative was not his own children, but Shiner’s cousin, who came from a well-off family and had a prestigious job.

"When my cousin learned about my mom’s illness, she immediately recommended a TCM doctor she knew in Yantai. She also explicitly told us that my mom’s condition was 100% incurable, and chemotherapy would only increase her suffering. She suggested herbal medicine to help her regulate her body and pass away peacefully. I still remember her classic remark: 'Western medicine lets you die with clarity, while TCM lets you live in blissful ignorance.'"

Shiner still feels helpless recalling that moment. His father firmly believed the cousin. Considering his wife was already 60, he thought enduring herbal medicine was better than suffering through chemotherapy to enjoy her remaining days. Although Shiner worked in the medical supplies industry and knew herbal medicine couldn’t cure cancer, he couldn’t override his father’s authority. Despite his strong objections, his father decisively followed the cousin’s advice. Shiner’s sister took leave to accompany their mother to Yantai to get the herbs. Shiner could only repeatedly remind his sister to stay alert, leave immediately if the doctor seemed suspicious, avoid being scammed, and only buy a one-week supply if they decided to proceed.

"Despite my countless warnings, my sister still fell for the doctor’s pitch. The doctor just asked my mom to stick out her tongue and took her pulse, saying no tests were needed. He prescribed a secret ancestral herbal formula for observation and charged 10,000 RMB for non-reimbursable medicine. Desperate for a cure, my sister just hoped it would help, thinking the cost didn’t matter."

Thus, Shiner’s sister and mother returned to their hometown in Henan with bags of sealed, unidentifiable "miracle medicine." With the family’s support, Shiner’s mother began her bewildering herbal treatment.

「 5. Severe Jaundice Caused by the 'Miracle Medicine' 」

As a traditional rural woman, Shiner’s mother, though literate, had already guessed from the report that her condition was serious. She firmly believed that expensive things must be good. So, even though boiling the costly herbs filled the room with a foul, urine-like odor, she gritted her teeth and drank bowl after bowl without complaint. She persisted for two full months. Shiner watched, heartbroken but powerless.

Then, one day in the second month of taking the herbs, Shiner’s mother began experiencing unbearable itching all over her body, and her skin grew increasingly yellow. As the Lunar New Year approached, the whole family returned home. Seeing their usually busy mother now lethargic, appetite-less, and bedridden, Shiner felt both heartbroken and anxious.

"On the third day of the Lunar New Year, relatives were gathered at home, eating and chatting, while my mom lay asleep in her bedroom, unaware of how critically ill she was. I was helping in the kitchen, remembering how my dad often said treating her condition would end up costing both money and her life. I felt deeply saddened. I made up my mind then and there: tomorrow, I couldn’t wait any longer. No more herbal medicine. I had to take my mom to the hospital."

Shiner still feels a pang of sorrow recalling this. When he usually encouraged his mother to stay strong and seek proper treatment, she would mention his father’s refusal to let her go to the county hospital, fearing she would selfishly burden her children. This made him ache for his mother, who faced life and death calmly yet actively cooperated with treatment. His father, also a hepatitis B patient, often complained of chest and liver pain. During his mother’s treatment, a chicken-egg-sized lump even appeared on his neck. He told Shiner he might pass away before his wife, and when Shiner urged him to see a doctor, he refused, claiming he had bought sleeping pills and would just take them if he got seriously ill to avoid burdening the children. This led to a fierce argument between Shiner and his father.

On the third day of the Lunar New Year, Shiner defied his family’s objections and resolutely took his mother to the county hospital. By then, with the help of a group member named Lynn, Shiner had joined the "Panda Group." He had studied extensive information on cholangiocarcinoma in the group. Seeing his mother’s symptoms, he suspected obstructive jaundice caused by tumor compression of the bile duct. The on-duty doctor agreed and scheduled a percutaneous drainage procedure for the fifth day.

Shiner considered taking his mother to a major hospital in Zhengzhou once the hospital resumed full operations after the holiday. However, his father, who was caring for her, firmly refused to travel far. Since Shiner had to return to work after the holiday, he had no choice but to address the biliary obstruction locally first.

After over half a month of hospitalization for liver protection, his mother’s jaundice finally improved, and her spirits lifted significantly. Shiner decided it was time for his mother to receive standardized chemotherapy.

「 6. The Chemotherapy Regimen at the County Hospital 」

Unable to seek treatment elsewhere, Shiner registered with a hepatobiliary surgeon at the county hospital. While accompanying his mother, he had studied numerous treatment experiences in the Panda Group and carefully reviewed the 2024 clinical guidelines. He decided to bring the latest guidelines downloaded from the group to discuss a chemotherapy plan with the doctor.

"I went to the outpatient clinic and asked the doctor how we should proceed. He asked me how I thought we should proceed, as they had never treated late-stage cholangiocarcinoma before. He searched for a while and pulled out a 2022 guideline. I told him I had the latest version. He said that was great and asked to see it, so we reviewed the guidelines on my phone together. Hearing him say that actually reassured me, because he admitted he wouldn’t blindly treat my mom if he didn’t understand the condition."

Thus, Shiner and the county hospital doctor studied the guidelines together. Based on the first-line treatment recommendations and his mother’s genetic test results, Shiner proposed a three-cycle first-line chemotherapy regimen: gemcitabine combined with cisplatin, plus the immunotherapy drug tislelizumab.

"My mom’s genetic test showed HER2 amplification, but the county hospital doctor, with limited knowledge, thought it was irrelevant. Having studied HER2 in the group and receiving reminders from members to add immunotherapy, I insisted on combining chemotherapy with immunotherapy for my mom."

After the second chemotherapy cycle, Shiner’s mother felt significantly better. The itching and jaundice gradually subsided. Seeing her improving condition, the family’s objections faded. Even the cousin and father, who initially opposed chemotherapy, stopped complaining. She completed a third cycle, but subsequent imaging showed disease progression in the lungs. Shiner realized this regimen might no longer be effective.

Shiner immediately sought advice in the Panda Group. Experienced members suggested adding trastuzumab. He promptly communicated with the county hospital doctor and requested it. After adding domestic trastuzumab, his mother underwent three more chemotherapy cycles. However, the second follow-up imaging still showed lung progression. The repeated setbacks nearly broke Shiner. Yet, remembering how his mother suffered when the drainage tube fell out and had to be reinserted—crying "I don’t want treatment anymore" due to her extreme thinness—he felt he couldn’t let her endure so much pain in vain. He decided to move to second-line treatment, adding paclitaxel to the chemotherapy regimen.

「 7. Severe Side Effects 」

Due to the local county hospital doctors’ lack of experience with the medication, during the first paclitaxel infusion, the doctor administered three bottles directly. Possibly due to accumulated toxicity from prior treatments or an excessive dose, this chemotherapy session caused severe skin breakdown and inflammation all over Shiner’s mother’s body. High fever and severe mouth ulcers made it impossible for her to eat. The long-standing drainage tube became loose, and nearly all the drainage fluid leaked into her abdominal cavity.

"My dad woke up in the middle of the night to find my mom clutching her stomach alone, with bile all over the bedsheets and quilt. But my parents were too embarrassed to bother the doctors late at night, so they endured until morning. By then, her abdominal cavity was infected, and she developed a fever again, lying helplessly in bed. I was already back at work in another city and could only worry helplessly over the phone. The county hospital doctors even mentioned that a transfer to Zhengzhou might be necessary."

Fortunately, after 8 days of antibiotic treatment, Shiner’s mother’s symptoms were effectively controlled. Recalling this ordeal, and after consulting Director Cheng from the Eastern Theater General Hospital, Shiner decided to discuss dose reduction with the county hospital doctor. They discontinued paclitaxel and switched to a dual-targeted therapy regimen combining trastuzumab and pertuzumab, along with immunotherapy.

「 8. Hardship Brings the Family Closer 」

Shiner knew the chances of his mother being eligible for surgery were slim, but he never considered giving up treatment. Especially now that she felt relatively well, ate and slept normally, and could easily handle three eggs and two steamed buns a day, her daily life was gradually filled with smiles instead of frowns. He felt all the efforts were worth it.

What surprised him even more was that his once-dominant father became more receptive to advice. He not only went to the hospital to check his liver but also started taking antiviral medication as recommended by the doctor. The lump on his neck gradually subsided under treatment, fortunately turning out to be just inflammation. During his mother’s chemotherapy hospitalization, if she wanted to go home, his father would drive her on an electric scooter for a few days. He had become much more considerate of his wife.

His mother’s treatment journey is far from over, but Shiner believes that as long as the family stays closely united, no challenge is insurmountable.

Images featuring the patient's portrait in this article are used with the patient's authorization. Unauthorized use is prohibited.

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