3 Metastases, 5 Regimen Changes: A Late-Stage BRAF V600E Colorectal Cancer Patient's 6-Year Journey of Perseverance and Hope | Patient Story

Six years after her father’s colorectal cancer diagnosis, H finally had the chance to reflect on this long journey. While accompanying him through his battle with cancer, she proactively—and sometimes out of necessity—learned everything she could about the disease. She transformed from a complete medical novice into a “semi-expert” capable of communicating smoothly with doctors. Throughout the treatment process, supported by her family, H took on the heavy responsibility of leading his care. Swept forward by countless uncertainties and sudden setbacks, she rarely had a moment to catch her breath.

Looking back on the path they’ve traveled, H admits, “We never dared to celebrate halfway.” Yet, deep in her heart, she holds a simple wish: that these days of “caring for both the elderly and the young” could last a little longer, and then a little longer still.

Author丨Dun'er
Editor丨Dun'er
Reviewer丨Guangguang

「 I. A Rushed Surgery 」

When her father was diagnosed with colorectal cancer in 2019, H was exactly three months pregnant. Looking back, she realized the signs of his abnormal bowel movements had appeared much earlier. In the first half of 2018, his daily bowel frequency began to increase, shifting from “two or three times a day” to “four or five times.”

H’s father was kind and family-oriented, but he also carried the stubbornness typical of his generation—“Admitting a mistake is impossible, and seeing a doctor is unnecessary.” Regarding his physical condition, “He said it might just be enteritis.” Unwilling to see a doctor, he only made minor dietary adjustments, but his condition did not improve.

It was only later that H learned a tumor had already grown at the junction of his colon and rectum. The tumor was compressing his intestines, causing a constant feeling of incomplete evacuation and making his stools thin and small. It wasn’t until one day, when he noticed blood in his stool, that he finally went to a local county hospital in Zhoukou for further examination.

The intermittent abnormal symptoms had already given her father a vague sense of what was coming. Even so, when the colonoscopy pathology report was finally placed in front of them, the whole family was momentarily at a loss and completely overwhelmed.

After the diagnosis, arranged by a friend who was a doctor, her father was admitted to the hospital to wait for a visiting expert surgeon from a provincial hospital.

The rushed first surgery exposed her father to significant risks. Preoperative examinations only included digestive system tumor markers and a standard CT scan. During the surgery, only 5 lymph nodes were cleared.

H later learned that colorectal cancer surgery requires clearing at least 12 lymph nodes for accurate staging—this became a hidden danger for the disease's recurrence later on.

On the 26th day of the twelfth lunar month, with the New Year atmosphere growing stronger, the family decided to discharge him without settling the bill so they could go home for the Spring Festival. During the first Spring Festival after his diagnosis, H took her parents to a park to see the lantern displays. At that time, she harbored a bittersweet thought: this might be the last Spring Festival she would spend with her father.

[ Photo of H's parents taken at a park near their home on the 15th day of the first lunar month after the first surgery ]

「 II. The “Hidden Danger” Erupts, Seeking Treatment in Beijing 」

To ensure her father received adequate nutrition, H created a detailed meal plan. Online sources suggested consuming 1.5 times his body weight in protein daily, so she required him to have at least two eggs, two cartons of milk, two large scoops of protein powder, plus lean meat and vegetables.

For a post-operative colorectal cancer patient, such a heavy load might be hard on a weakened digestive system. However, her father showed a strong will to survive. “If I can’t eat it all at once, I’ll rest and eat more later.”

Shortly after surgery, her father began the XELOX chemotherapy regimen. The early spring weather was still chilly, and the side effects of chemotherapy made him unable to touch metal door handles, but he experienced no other discomfort. “Back then, we were probably ‘ignorant and fearless.’ Seeing that my dad had few side effects, everyone’s mood remained relatively stable.”

The turning point came during the follow-up for his third chemotherapy cycle. In April 2019, a contrast-enhanced CT scan revealed 5 metastatic lesions on his liver. Previously, his tumor markers had dropped from over ten thousand to just over 1,000, but this time they rebounded to over 2,000.

To locate the lesions, her father underwent a PET/CT at a hospital in Zhengzhou. Faced with the liver metastases, the doctor’s only recommendation was to switch from a two-drug to a three-drug regimen.

How should they proceed? Should they continue chemotherapy? The family fell into confusion.

At that time, H had not yet developed a systematic understanding of the disease, but she felt that “continuing treatment here would be ‘waiting for death.’” She advocated trying a top-tier hospital. Ultimately, the family decided to go to Beijing, partly because H’s younger sister worked there. “At least we’d have a relative locally to help us out,” which was undoubtedly a major deciding factor.

During their first week in Beijing, H’s sister accompanied her father between 301 Hospital, Sun Yat-sen University Cancer Center, and Peking University Cancer Hospital. They sought out acquaintances, booked special needs clinics, and met doctors they had previously only seen online. Yet, a definitive treatment plan for her father remained elusive.

As the Qingming holiday approached, the family prepared to return to Zhoukou. At the high-speed rail station, H’s sister received a call from Peking University Cancer Hospital: “Come in for admission next Monday to prepare for surgery.”

H describes this choice as “a twist of fate,” and it was from this moment that a turning point in treatment emerged.

During the days waiting for surgery, her father’s mood visibly improved. The ward was filled with patients from all over the country who had come seeking treatment. Through conversations with them, he became more talkative and fully immersed himself in preparing for the second surgery.

To this day, her father remains unaware of the details of the first surgery. It was only during the preoperative family consultation that H learned the hidden danger from the first surgery had finally erupted.

Nearly 60% of her father’s liver was removed to the maximum safe extent. During his hospitalization at Peking University Cancer Hospital, the encouragement from the medical team and the support and comfort from fellow patients gave him tremendous confidence.

After surgery, her father continued with the XELOX regimen under the oncology surgery department at the hospital. For each chemotherapy cycle, the family had clear roles: H booked tickets and arranged accommodation; her sister communicated with doctors about medication; and her father, accompanied by his wife, frequently traveled between Henan and Beijing.

[ June 2021, after a follow-up visit at Peking University Cancer Hospital, H takes her daughter to the station to pick up her parents ]

「 III. The Breakdown Brought by Iliac Bone Metastasis 」

Everything seemed to be back on track. However, after five treatment cycles, her father developed a right iliac bone metastasis. The surgical team recommended changing the regimen. But drawing on her accumulated medical knowledge, her assessment of the condition, and advice from fellow patients, H and her sister decided to transfer him to the gastrointestinal oncology internal medicine department at Peking University Cancer Hospital for targeted treatment.

Based on his condition and genetic test results (BRAF V600E mutation), the doctors formulated a detailed treatment plan. Over the next three months, her father completed 6 cycles of the IRI + BEV regimen. Concurrently, he received short-course radiotherapy for the right iliac bone metastasis.

The second metastasis brought varying degrees of psychological pressure to H’s family.

Bearing the long-term mental burden of her father’s illness, compounded by her own work, H’s younger sister fell into severe anxiety and developed a strong resistance to facing doctors and discussing the condition. From this point on, H took over the doctor-patient communication. Her sister would go to the hospital, and once she met the doctor, H would communicate with them via phone from the other end.

Her father also showed strong resistance to radiotherapy. As a teacher, H used her “acting” skills, using a mix of truth and gentle persuasion to coax him into accepting the doctor’s advice.

H knew clearly that during much of the treatment, her father was pretending not to understand while actually knowing everything. “If you don’t spell out the severity of the illness, or if you coax and persuade him, he will accept it all. Whether he emotionally believes it or truly believes it in his heart, he always gives me a positive response: ‘I believe what you say.’”

At that time, H had just given birth three months prior. The lingering pregnancy hormones combined with her father’s condition caused her emotions to completely break down.

One morning at 4 AM, after feeding her baby, H stared out the window and suddenly began to cry. It started as quiet sobbing and escalated into loud wailing. It was the most broken-down moment during the entire treatment, as if all the accumulated grievances and fears erupted at once. But after crying, wiping her tears, she knew the work still had to continue.

「 IV. A Glimmer of Hope in Despair 」

Starting in the second half of 2019, her father’s condition began to fluctuate repeatedly. In December of that year, he finished treatment at Peking University Cancer Hospital, but his CA199 tumor marker was still over 70, not yet within the normal range. Feeling uneasy, H arranged for him to receive three additional cycles of CAPE + BEV at a local hospital in early 2020. As a result, his CA199 suddenly spiked to over 200.

Due to the pandemic, the family couldn’t travel to Beijing. H could only consult her attending doctor online. The doctor recommended the targeted drug vemurafenib, but the local doctors did not approve of this plan and insisted on having her father take three cycles of oral S-1. “Those three months were the most painful.”

Her father’s platelet count constantly teetered on the edge of dropping dangerously low. The domestic platelet-boosting injections prescribed by the hospital had severe side effects, causing fever and pain. He received eight injections and was hospitalized for 13 days. During that time, her father often muttered, “Let’s stop treatment, it’s too much suffering.”

In May 2020, as the pandemic situation in Beijing eased, H took her father straight to Peking University Cancer Hospital. The doctor adjusted the regimen to vemurafenib + cetuximab. Three and a half months later, his tumor markers rebounded once again. In November, the doctor switched the regimen to regorafenib + PD-1 inhibitor for immunotherapy. “Using the domestic version reduces the financial burden.”

While waiting for treatment, her father underwent another genetic test. This time, his TMB (Tumor Mutational Burden) had risen from 4 to over 20. The doctor told H, “With this result, your father’s response rate to immunotherapy should be high.”

After completing two cycles of immunotherapy, his tumor marker levels were “halved.” However, the intense treatment came with severe side effects.

He quickly developed serious immune-related adverse reactions, primarily severe neurodermatitis. At its worst, his feet were covered in dense blisters that ruptured, leaving large areas of ulceration and exudation, making it impossible for him to walk. Meanwhile, patches of white spots appeared on his arms, scalp, forehead, and neck, continuously spreading.

Additionally, he developed persistent thyroid dysfunction, an irreversible immune system damage triggered by immunotherapy, requiring lifelong levothyroxine maintenance. At its peak, his dosage reached the maximum of 4 tablets daily, later adjusted to 3 tablets based on follow-up results. “I just have him get his blood drawn once a month, and I adjust the dosage based on the numbers.”

「 V. Courage from the ‘Panda Group’ 」

During his treatment at Peking University Cancer Hospital, an article from the “Panda and Friends” WeChat official account titled “A Beijing Middle-Aged Man’s Notes on Fighting Late-Stage Colon Cancer” deeply moved H. “They faced such complex and difficult situations, yet they persisted with treatment and achieved relatively good results. I felt we could do it too.”

After 2020, her father’s condition became increasingly unpredictable. As treatment deepened, H’s scattered medical knowledge was no longer sufficient to guide subsequent treatment decisions. She urgently needed a place to communicate and seek advice. After careful consideration, she decided to join the “Panda Group.”

In the group, H systematically learned a vast amount of colorectal cancer knowledge, gaining a comprehensive and in-depth understanding of the disease and treatment options. H reflected that “after encountering problems, I finally didn’t have to face them alone.” Later, before every doctor consultation, H would organize her thoughts in advance, bringing at least two A4 pages of mind maps. Whenever the doctor proposed a regimen change, she already had a clear idea in mind.

[ Mind maps prepared by H ]

Once, H’s daughter accidentally deleted two years of chat history from the group on her phone. It felt like losing something incredibly precious. “It was more painful than losing my own teaching materials.”

These chat records had supported her through many long, dark nights. Whenever her father’s condition took a turn, she would search keywords to find relevant treatment strategies from others. During immunotherapy, facing overwhelming side effects, volunteers like “Cat Head” in the group provided H with numerous solutions. “At first, I was too shy to ask. Later, I realized Cat Head promptly answered everyone’s questions, so I started tagging him directly. He always organized solutions for me and shared documents and resources.”

Drawing on the group’s experiences, H even developed her own platelet management spreadsheet: check blood counts on the 7th day after chemotherapy; if platelets drop below 55, administer two injections of TPO; recheck on the 3rd day, and stop injections if they don’t drop further. She also obtained a blood test Excel template from a group member, listing all of her father’s indicators so she could instantly see what was high or low. “A volunteer in the group said, ‘Frequent monitoring reduces suffering.’ I followed that advice, and later, my father’s platelet levels rarely delayed his chemotherapy.”

[ Father's blood test tracking spreadsheet ]

The rigorous treatment plan and positive results made her father trust H’s decisions. He actively cooperated with treatment, faithfully getting blood tests every three days as required. Throughout the mid-to-late stages of treatment, her father placed immense trust in H. “Whether it’s good or bad, he just says, ‘You decide.’”

After November 2020, her father’s condition stabilized. He continued maintenance therapy with regorafenib + PD-1 inhibitor. Starting in August 2023, he switched to single-agent toripalimab. He used immunotherapy for four years: strictly following the standard cycle for the first two years, extending to every two months in the third year, and even to once a quarter in the fourth year. He highly valued this medication, finding it affordable, and even if it was just psychological comfort, he insisted on continuing quarterly doses. If not for the later diagnosis of asymptomatic immune-related pneumonitis and myocarditis, he would likely have continued indefinitely.

In November 2021, a new issue arose in his adrenal gland. This time, H remained calm. Thanks to frequent monitoring, after her attending doctor requested a multidisciplinary consultation (MDT), it was confirmed as a new metastasis. Radiotherapy was immediately arranged, effectively controlling the lesion.

To this day, her father maintains a regular follow-up schedule: comprehensive check-ups every six months and tumor marker screenings every two months, constantly monitoring his condition.

「 VI. Hardship Brought the Family Closer 」

Beyond medical treatment, what sustained her father through this long battle was the tight-knit love and unity of his family.

H admits this tough battle was never hers alone: her husband best understood her unspoken words, fully accepting her even when she lashed out in panic, quietly handling chores and steadying her mind, becoming her “rock” during emotional breakdowns; her mother never missed a moment, repeatedly accompanying her husband to Beijing while H and her sister worked and cared for children, patiently listening to his irritable outbursts from treatment, serving as the strongest logistical pillar; her younger sister grew through self-redemption, overcoming her own anxiety and becoming H’s “psychological strategist,” offering timely guidance when H’s emotions faltered.

H is grateful that if the family hadn’t pulled together, they might never have survived those grueling days of seeking treatment across cities.

Her father no longer sees himself as a cancer patient. He never misses colleagues’ gatherings or family banquets. Once, he rode his bicycle over 60 miles from Zhoukou back to his hometown, leaving H utterly astonished.

Her father’s passion for life has never dimmed. As for the future, H remains clear-headed, keeping her worries about the disease hidden. She once asked the doctor what they would do if the current regimen failed. The doctor advised her: “Your current situation has already exceeded expectations. What you need to do now is maintain frequent, regular follow-ups and live each day to the fullest.”

People’s memories of past pain often fade with time. H says, “If I had to go through that life of traveling with a child again, I don’t know if I could endure it. But those hurdles that seemed so difficult back then have all been successfully crossed.” Throughout the treatment, she has always been grateful. Now, she is willing to share her accumulated experience unreservedly with those in need, hoping to help them avoid some detours.

Someone once asked her, “Why has your father’s illness been managed so well?” H summarizes it as “scientific and standardized treatment, family support, and a bit of luck. More importantly, finding the right doctor who can bring tangible, positive results to the treatment.”

In 2023, H’s mother was diagnosed with early-stage lung cancer. Drawing on her father’s treatment experience, H avoided detours and took her mother directly to Peking University People’s Hospital for surgery, which resulted in an excellent recovery.

To outsiders, having two cancer patients in the family might seem overwhelming: “How will you manage caring for two cancer patients at once?” But H remains calm: “Now that both of their conditions are stable, my life has returned to normal. As long as they don’t have any issues, my days can continue peacefully.”

In H’s WeChat moments, there is a cherished photo of an “elder and a child” from behind—her father and granddaughter sitting on the courtyard steps. For her recent birthday, her wish was simple and earnest: “I hope these days of having elders above and children below can last a few more days.”

To protect patient privacy, the name used in this article is a pseudonym.
Images containing the patient's portrait have been authorized by the patient and may not be used without permission.

Patient Stories | Click text to jump directly

A Beijing Middle-Aged Man's Notes on Fighting Late-Stage Colon Cancer | Walking with Gastric Cancer: Brother Zhuzi's Brilliant Life | A Ming: Two Years Accompanying My Mother Through Liver and Lung Metastatic Colon Cancer | In Memory of A Xing: He Crossed the Night Sky Like a Meteor, Illuminating Countless Dark Nights | Sibling Love: 4 Years of Treatment for Colon Cancer with Liver Metastasis | Xiao Li: A Patient's Self-Narrative of Fighting Cancer | Sister Xiuxiu: The Treatment Journey for Colon Cancer with Liver and Ovarian Metastasis | Brother Guo: A Tenacious Treatment Path for Colon Cancer with Peritoneal Metastasis | Nao Nao: A 27-Year-Old's Self-Rescue Journey After Colon Cancer Recurrence | Sister Tudou: A 7-Year Battle Against Colon Cancer with Lung and Brain Metastasis | Jin Xia: A 4-Year Treatment Path for HER2-Positive Gastric Cancer | Mickey: A 31-Year-Old's Late-Stage Gastric Cancer Treatment Journey | Alison: Treatment for HER2-Positive Late-Stage Colon Cancer | From Stage IV Gastric Cancer to Complete Remission | 78 Liver Metastases Do Not Mean a Death Sentence | The Late-Stage Cancer Patient Who Entered the ICU Due to Infection Is Now Tumor-Free | Cancer Blogger Fengzi Passes Away: Who Will Care for Young Patients Fighting Cancer Alone? | Sister Yangguang: Life Should Not Lose Its Color Because of Illness | Nine Years of Late-Stage Cancer Battle: Happiness Still Found Me | From Postpartum Constipation to Late-Stage Colon Cancer: A Young Lynch Syndrome Mother's Miracle | A Post-85s Solo Cancer Journey: Unfinished and To Be Continued (Part 1)

Doctor-Patient Communication | Click text to jump directly

Peking University Cancer Hospital Shen Lin: Step-by-Step Guide for Colon and Gastric Cancer Patients on How to Seek Medical Care

Peking University Cancer Hospital Xing Baocai: Doctor-Patient Communication on Colon Cancer Liver Metastasis

Sun Yat-sen University Cancer Center Chen Gong: Should Surgery Be Performed Immediately After Colorectal Cancer Diagnosis? | On Surgery for Colorectal Peritoneal Metastasis | Treatment Strategies for Colorectal Liver and Lung Metastasis

Guangzhou Sixth Affiliated Hospital of Sun Yat-sen University Xiao Jian: Chemotherapy, Targeted Therapy, and Immunotherapy for Late-Stage Gastric Cancer

Beijing Friendship Hospital Yao Hongwei: Examinations Rectal Cancer Patients Need and How to Read the Reports