Rising from the Despair of Colon Cancer Recurrence: How a 30-Year-Old Changed His Destiny Through Awareness | Patient Story

Author | Dun'er

Editor | Dun'er

Reviewer | Guangguang

「 Part 1: "Insignificant" Pain 」

In the second half of 2021, Hudao began experiencing pain in his lower right abdomen. The pain was neither severe nor regular. "When idle, I'd feel a slight bloating pain, but whenever I was busy, I'd just ignore it." On a 0-10 pain scale, he rated it a 2 or 3, "not even as bad as the cramps before diarrhea."

From late 2021 to early 2022, Hudao started feeling an incomplete bowel movement and noticed his stools had become noticeably thinner. He visited the hospital twice. "The first diagnosis was 'intestinal dysfunction.' The second time, the doctor simply told me 'it's nothing' and prescribed probiotics. I even asked if I needed a colonoscopy, but the doctor said 'it's unnecessary.'" Hudao later speculated, "Maybe they thought I was too young and my symptoms were too mild."

However, the body's warning signals never faded. Hudao recalled an article from a medical popular science account he followed: "Colon cancer is one of the easiest cancers to detect. Pay attention to any changes in bowel habits or stool characteristics." Since his symptoms somewhat matched the description, he couldn't shake off his concerns and decided to get a colonoscopy for peace of mind.

「 Part 2: When "Youth" Is No Longer a Shield 」

Due to the pandemic, his colonoscopy scheduled for June was postponed to early September. The examination revealed a mass in both his ascending and descending colon. The ascending colon mass was larger and pathologically confirmed as cancer; the descending colon mass was smaller and diagnosed as a tubular adenoma.

"I'm a highly compliant patient who firmly believes in leaving professional matters to professionals." To better cooperate with subsequent treatment, Hudao was admitted to the First Affiliated Hospital of Soochow University.

In September 2022, Hudao underwent radical surgery for colon cancer at the hospital. "The decision for surgery was made because imaging showed obstruction and intussusception," he recalled. Postoperative pathology revealed dMMR and T3N1 staging. Following the doctor's recommendation, he used a genetic testing company, which reported MSI-L and TMB=0.36.

At that time, Hudao knew nothing about terms like dMMR, MSI, or TMB. Based on his results, the doctor recommended an 8-cycle dual-drug chemotherapy regimen post-surgery, following guidelines.

During chemotherapy, Hudao experienced severe bone marrow suppression, with a sharp drop in white blood cells and platelets. While white blood cells could be quickly restored with G-CSF injections, his platelets bottomed out at 60 and could only be slowly raised with eltrombopag. To boost platelets, he even took deer blood crystals. "They were hard to swallow, very fishy, and I had to encapsulate the powder myself," Hudao said. As for their effectiveness, he couldn't say for sure.

Additionally, he took Zadaxin, Xihuang capsules, Xiaoaiping, Huachansu capsules, and more. Some were recommended by surgeons, others by oncologists, and he took them all. It wasn't until he joined the "Panda Group" (a patient community) that he realized these medications were largely unnecessary. "Except for Zadaxin, I quit all the others," he said. He kept Zadaxin initially because his family believed "expensive means effective," but later secretly reduced the dosage from twice a week to once.

Reflecting on his first year of treatment, Hudao admitted, "The detours I took were more winding than a mosquito coil." The biggest detour wasn't the blind use of medications, but ignoring his family history.

During chemotherapy, he asked his parents about family history, and both said "none." He later learned that his mother's side actually had a history. His grandfather died of stomach cancer, and several of his grandfather's siblings and their children had suffered from gastrointestinal tumors, especially colorectal cancer.

"My mom thought stomach cancer and colon cancer were different, so she said there was no relevant family history. Plus, we rarely kept in touch with those relatives, so I had no idea at the time."

What he regretted most was the genetic test. "I spent 19,800 RMB for nothing." At the time, he didn't know that the MSI-L result would be overturned two years later. That erroneous result led everyone astray, completely ruling out Lynch syndrome.

「 Part 3: A Mother's Mirror Reflects the Overlooked Truth 」

After his own diagnosis, Hudao tirelessly "urged" all his relatives to get colonoscopies. However, due to his mother's alcohol allergy, many places couldn't perform the procedure for her, so it kept getting delayed.

In 2023, Hudao had his mother take a fecal occult blood test recommended in the group. The result was positive. They went straight to Changhai Hospital for a colonoscopy. "The results were shocking: double primary tumors, massive masses."

His mother's postoperative pathology showed dMMR, T3N1, and mucinous adenocarcinoma. Following guidelines, she was also prescribed dual-drug chemotherapy. Hudao asked a group member, "Daqi," to help connect with Director Sun's team at Jiangsu Province Hospital to try immunotherapy in a clinical trial. They successfully enrolled, but unfortunately, she was randomized to the control group—still dual-drug chemotherapy, and out-of-pocket.

After his mother started treatment, Hudao re-examined his own pathology and realized he was also dMMR. Looking back, he believes the initial large-panel test's MSI-L and TMB-L results created a strong first impression that prevented anyone from considering this possibility. "Both my mom and I lack MSH2. That's when it finally clicked about family history and Lynch syndrome."

Sure enough, the second sequencing result was MSI-H (microsatellite instability-high), overturning the previous conclusion. "For tumors without surgical options, an MSI-H result supports immunotherapy, which is a blessing in disguise," Hudao said, unable to hide his excitement.

He later consulted his surgeon about the technical reasons for the discrepancy between the two tests—sampling depth and sample quality can affect results. But for Hudao, "this result matters more than anything." The chance to use immunotherapy and the feeling of surviving a disaster outweighed everything else.

After confirming MSI-H, Hudao, on the advice of group members, went to Fudan University Shanghai Cancer Center to see Dr. Liu Fangqi. Based on his condition, the doctor recommended a classic immunotherapy regimen: PD-1 monoclonal antibody for 2 years. Considering cost, he chose tislelizumab. "The doctor told my family that tislelizumab achieves over 90% of the efficacy of Keytruda, but costs less than a third."

From October 2024 to September 2025, Hudao began monotherapy with tislelizumab, administered once every 3 weeks, 2 vials (100mg) each time. After just 3 doses, follow-up imaging showed the metastatic lesion had completely disappeared. The doctor assessed it as cCR (clinical complete response).

Following online consultations with his doctor, Hudao adjusted the originally planned 2-year immunotherapy course to 1 year. Additionally, he will undergo enhanced CT scans every six months and a gastroscopy/colonoscopy annually.

「 Part 4: When Recurrence Strikes, Knowledge Becomes a Weapon 」

In September 2024, Hudao's follow-up report showed abnormalities. An enhanced CT scan revealed a new soft tissue density in the mesenteric fat below the anastomosis, which the radiology department leaned toward calling "inflammatory changes."

Recalling his past diagnostic experiences, Hudao chose to seek a second opinion online from Dr. Xie Yongzhi, recommended by a group member. "I've learned from past mistakes and wanted peace of mind with a double check." Dr. Xie judged it as metastasis, located outside the anastomosis in the mesentery. Hudao then asked Dr. Guo Liang, a VIP expert at Soochow University, to review the scans. Dr. Guo was "very certain it was metastasis."

"This might be the professional difference between radiologists and surgeons/oncologists," Hudao noted. He understood this diagnostic divergence and decided to redo a first-generation PCR sequencing.

"There were two reasons," Hudao explained. "First, the recurrence was outside the anastomosis in the mesentery, making surgery extremely difficult or nearly impossible. We had to rely on drug therapy. Second, I had already gained some knowledge about Lynch syndrome and realized that both my mother and I were dMMR with MSH2 mutations, making Lynch syndrome highly likely. Dr. Li Yingjie, consulted by Daqi, also agreed it was likely Lynch."

「 Part 5: Joining the Panda Group: From Learner to Ferryman 」

Hudao's connection with the Panda Group began in January 2023.

Initially, his family found this patient community on Zhihu and Xiaohongshu. He joined Group 7. At first, he was "quite proactive in asking questions." After learning the basics, he "started confidently answering simpler questions for other members." Perhaps due to this enthusiasm, he was discovered by Sister Tongxin in the group and recruited as a volunteer.

As a volunteer, he mainly helped answer questions. "I would intentionally or unintentionally collect and save classic replies from experts, then copy-paste them into the group for new members to learn." Hudao admitted, "Only after staying in the Panda Group did I systematically learn about dMMR and Lynch syndrome, laying a shallow foundation for my and my mom's subsequent treatment." At least cognitively, it was "completely different" from before joining.

In 2024, Hudao joined Lynch Group 4. After a small gathering in Suzhou with Director Han, he was added to the Lynch admin group and subsequently joined Groups 8, 9, and 10, eventually becoming an admin for Groups 9 and 10.

"Because Lynch syndrome patients generally have a better prognosis, the group atmosphere is relaxed and lively. Since most patients are young, we often joke around and chat, while also answering questions."

As an admin, he interacts with many dMMR patients daily and finds their most common pitfall is "rushing into surgery." He repeatedly emphasizes: "Young colon cancer patients must first confirm their dMMR or MSI status. Starting immunotherapy before surgery versus going straight to surgery makes a world of difference, especially for Stage III patients."

「 Part 6: The Self-Cultivation of the Primary Care Manager 」

Looking back at his nearly five-year treatment journey, the most profound turning point was joining the Panda Group. That choice changed Hudao's cognitive approach to the disease and altered the destiny trajectory for both him and his mother.

Today, Hudao defines himself as "good at relying on his parents, absorbing knowledge in the Panda Group, and being the primary manager of the entire care journey for himself and his mom." For colon cancer patients, especially newly diagnosed ones, he shares his most valuable advice:

First, after noticing bodily issues, initial diagnosis is best done at major hospitals in Beijing, Shanghai, Guangzhou, or Shenzhen. These places have richer medical resources and more accurate professional judgments, minimizing the risk of missed or misdiagnoses.

Second, young patients must undergo immunohistochemistry or microsatellite instability testing. This is key to distinguishing dMMR/MSI-H and directly determines the treatment pathway.

Third, if financially feasible, try to get a comprehensive large-panel genetic test. Genetic results directly impact treatment direction. In his case, at recurrence two years post-surgery, the second test had to use old tissue samples, which carries a risk of failure or error. A comprehensive test at initial diagnosis would have saved many detours.

Fourth, people over 30 should learn to "look back after a bowel movement," paying attention to stool color and shape. If significant changes occur, remember to get checked. Colonoscopy is the gold standard, but if it's too troublesome, a fecal occult blood test can be a good starting point. Early detection and treatment of colon cancer are far more important than imagined.

"Knowledge is the cornerstone of treatment," he said. "Without the training from the Panda Group, I don't know how many more detours I would have taken."

「 Part 7: Two Paths to Self-Acceptance, Equally Composed 」

During the Spring Festival this year, Hudao met a distant cousin. She was diagnosed with breast cancer years ago and has been on targeted therapy since her recurrence last year. Both are cancer patients, yet their approaches to living with the disease are starkly different.

Initially, Hudao thought his illness was caused by "bad lifestyle habits" and just wanted to "survive quietly." After joining the Panda Group and learning he was dMMR, he gradually "let go," treating himself mostly as a "normal person" most of the time. Since genes are the culprit, he no longer wants to blame himself.

His cousin chose another path. She carefully narrowed her social circle to be a "qualified patient." She consciously avoids unhealthy lifestyles but never feels aggrieved. Besides raising her child, she found more hobbies in life. She manages herself as a patient and finds peace in it.

His cousin bought relevant books, studied them repeatedly, took detailed notes, and even highlighted the colorectal cancer sections to send to Hudao.

"Why did both you and your mom have Lynch syndrome, but she only developed it at 60, while you got it so young?" his cousin said. "Diet and environment also greatly impact you. Even with Lynch, there's a chance of not developing it, or developing it later."

Hudao deeply admires his cousin. Despite the huge sacrifices illness forced upon her, she has no sense of stigma, manages herself well, never overthinks, and maintains a positive and peaceful mindset.

"Several mentors in the Panda Group have mentioned that a good mood significantly helps the condition." Hudao wants to offer group members two choices: You can be like his cousin, carefully protecting yourself, but without resentment; or you can be like him, following your heart and living freely within controllable limits.

"Some find joy in quiet reflection within a room; others find it in letting go and embracing the world outside," Hudao quoted from the Lantingji Xu. Regardless, the key is to find the lifestyle that brings you inner peace and stick to it firmly.

「 Part 8: No 'What Ifs', Only the Future 」

After his mother's surgery, Hudao intensively studied Lynch syndrome. Combining this with his own experience, he formed a new perspective: If they had confirmed the dMMR status first and used immunotherapy before surgery, they likely would have achieved a pathological complete response (pCR), avoiding surgical trauma. Unfortunately, there are no "what ifs." Both had Stage III tumors. "Awkwardly enough, we both ended up on dual-drug chemotherapy, sharing the same illness and fate."

Though fate brings cruel tests, it also forges life's resilience through hardship.

Cancer itself is not terrifying; what is terrifying is ignorance and fear of it. Hudao knows not everyone will be a lucky MSI-H patient, but every patient can become the primary manager of their own care journey.

To gain more control over health, one must remain rational, actively learn, and take charge of diagnosis and treatment to gain the upper hand in the battle against disease.

To protect patient privacy, names in this article are pseudonyms. Images featuring patients have been authorized by them and may not be used without permission.