A Colonoscopy Revealed a Thousand Polyps: A 28-Year-Old's Life-and-Death Journey from Henan to Shanghai | Patient Story

Looking back on my treatment journey, I suddenly realize that I have gradually grown from a complete novice into a "half-expert" volunteer who can provide emotional support and comfort to fellow patients in our group. The beauty of life lies in its endless hopes and unpredictable turns.

I believe my journey is still long. Even if the road ahead is fraught with difficulties, I trust that perseverance will lead me forward.

—————
Authors｜Shimu Zili Ya, Guangguang

Editor｜Xianning

「 I. Not Hemorrhoids, But Colon Cancer 」

During my company's routine health checkup in 2023, the results indicated an elevated carcinoembryonic antigen (CEA) level. However, considering my young age and the complete absence of daily discomfort, I did not take this result to heart.

In July 2024, I began experiencing unexplained rectal bleeding. Initially, I assumed it was due to hemorrhoids—after all, in the 21st century, who doesn't have them? But by September, despite maintaining a light diet for a long time, the bleeding worsened without any signs of relief. I started to think it was truly time to visit a hospital.

My uncle happened to work at a hospital, so I took some time to visit him and mentioned my desire to undergo a colonoscopy and gastroscopy. At first, he was puzzled, thinking I was making a fuss over nothing and wondering why a young person like me would suddenly want these tests. After I explained that I had been experiencing rectal bleeding for three consecutive months, he immediately ordered the relevant examinations, scheduled for the next day. After paying the fees and picking up the bowel preparation medication from the pharmacy, I walked out of the hospital with light steps, completely unaware that a dark moment that would change my destiny was approaching.

On October 28, 2024, I arrived at the hospital early to queue for the examination. The entire process went smoothly. After the procedure, the doctor told me to return in 3 days for the pathology results. Feeling completely relaxed, I went to ask my uncle about the colonoscopy results. His expression was highly unnatural as he told me to go home first, saying the results weren't out yet. I had a vague sense of foreboding and quickly asked if there was a problem with my colonoscopy. He continued to use similar evasive words to brush me off. Full of suspicion but helpless, I obediently went home.

After waiting anxiously for three days, I hurried to the hospital to collect the pathology results and report. Halfway there, my mother suddenly started calling me repeatedly, acting out of character, telling me not to rush to the hospital to get the results. She asked me to wait at my uncle's house instead, saying he would pick them up and bring them home so I wouldn't have to make an extra trip. Unable to argue with her, I went to my uncle's house to meet her.

The moment we met, I immediately asked if the colonoscopy results were unfavorable. With a worried face, my mother explained that she stopped me from going to the hospital for two reasons: first, she was afraid I wouldn't be able to handle seeing the results myself; second, if I picked them up, my uncle wouldn't be able to consult other doctors about them. I insisted on seeing the report right away. My mother opened the colonoscopy report my uncle had sent her. The words "low-grade adenoma" caught my eye. I didn't realize the severity of the situation at all, naively thinking it was just an adenocarcinoma that could be surgically removed—no big deal. But then I thought about my parents, belonging to an older generation, who are easily influenced by traditional views and tend to panic at the mere mention of cancer. Plus, I was so young, and their concern naturally led to anxiety, which I could understand.

「 II. From Early Stage to Locally Advanced 」

As a doctor, my uncle immediately started looking for a professional colorectal cancer surgeon after reviewing my colonoscopy and pathology reports. Later, during his time off, he took my parents and me to the Henan Cancer Hospital. The doctor promptly ordered a series of preoperative examinations, including contrast-enhanced CT, contrast-enhanced MRI, and echocardiography. To reassure them, I cooperated fully. However, as the test results came out one after another, I, who initially thought my family was overreacting, began to gradually break down. It seemed my condition couldn't be solved with just a "single cut."

Initially, when the contrast-enhanced CT showed no distant metastasis, my family and I breathed a sigh of relief. I was genuinely overjoyed, thinking they really had been making a fuss. But when the contrast-enhanced MRI results came out, my mood instantly plummeted from the clouds to the depths: low rectal cancer located 2 cm from the anus, preliminary staging T4bN2bM0, with suspected invasion of the levator ani muscle. The hospital immediately ordered additional immunohistochemistry tests for KNPB and PD-L1. The results came back as pMMR, with no mutations in KNPB. I stared at the results for a long time, finally understanding the saying that one should not easily claim empathy without experiencing it firsthand. This feeling of loss and sorrow is perhaps something only fellow patients can truly comprehend.

「 III. Inability to Preserve the Sphincter and Joining the Panda Group 」

Taking the test results back to the general surgery department at Henan Cancer Hospital, the doctor carefully reviewed them and informed me that sphincter preservation was currently not possible, and recommended transferring to the radiotherapy department for preoperative neoadjuvant therapy. Learning that I might need a permanent stoma, I couldn't accept it at first, and my parents instantly fell into despair. Refusing to give up, I consulted Dr. Huang Liang from the Sixth Affiliated Hospital of Sun Yat-sen University in Guangzhou online. He told me that sphincter preservation might be possible. This completely different opinion from Henan Cancer Hospital instantly reignited my fighting spirit for treatment. I immediately decided to travel alone to Guangzhou to seek medical care.

The night before departure, I suffered from severe insomnia. I couldn't help but constantly search the internet for cases similar to mine based on the conclusions in my reports, trying to draw conclusions and find coping strategies.

By chance, a fellow patient on Xiaohongshu recommended "Panda and Friends" to me. With her help, I joined the Panda Group. After entering, I immediately studied the group materials systematically. Contrary to my expectation that cancer patient groups are usually filled with negative energy, the members of the Panda Group were full of vitality. Many chatted daily about everything from food to scenery, sharing various interesting topics. This unconsciously provided me with immense emotional support. Encouraged by them, I gradually emerged from my depression and slowly began to accept the reality of my cancer diagnosis.

「 IV. Not Colon Cancer, But FAP 」

After joining the group, members like Sister VV, Sister Zhong, Sister Heiji, Sister Hua, and Brother Wang warmly answered my questions as a novice. After repeatedly reviewing my colonoscopy and pathology reports, they suspected I had FAP (Familial Adenomatous Polyposis) and recommended I join the corresponding sub-group within the Panda community.

[ Extended Learning on FAP: Some people's intestines can develop hundreds or even thousands of densely packed polyps. This is the legendary Familial Adenomatous Polyposis (FAP), a hereditary digestive system disease.

Without proper intervention, almost all FAP patients will eventually develop colorectal cancer. Additionally, FAP may be accompanied by various extra-colonic manifestations, such as osteomas, epidermoid cysts, desmoid tumors, upper gastrointestinal hamartomas, congenital hypertrophy of the retinal pigment epithelium, hepatoblastoma, and thyroid tumors.

The root cause of FAP is an inactivating mutation in the Adenomatous Polyposis Coli (APC) gene.

FAP patients often require total colectomy (or proctocolectomy). Postoperatively, many patients develop multiple desmoid tumors in the abdominal cavity. Many doctors lack experience with this, mistake it for tumor recurrence, and administer chemotherapy. Patients may then pass away inexplicably under the dual blow of desmoid tumors and chemotherapy. We have witnessed too many such tragedies.

FAP was included in the second batch of the Rare Disease Catalog in September 2023 (No. 27). Popularizing FAP knowledge, promoting screening for suspected gene carriers, early intervention, and preventing malignant transformation remain long-term and arduous tasks.]

By this time, I had already arrived in Guangzhou to consult about sphincter preservation. After researching FAP-related materials, my recently calmed heart sank again. I applied to join the sub-group. Teacher Zhouzhou, the administrator of the Panda FAP group, carefully reviewed my information, asked detailed questions about my treatment progress, and recommended several doctors. After consulting Professor Liu Fangqi from the Colorectal Surgery Department at Fudan University Shanghai Cancer Center via Haodf, I immediately left the Sixth Affiliated Hospital and went to Fudan Cancer Hospital for an in-person consultation.

Professor Liu thoroughly reviewed my previous examinations and then arranged for me to consult Professor Xia Fan from the Radiotherapy Department at Fudan Cancer Center. Under Professor Xia's recommendation, I began preoperative neoadjuvant therapy, using a regimen of 5 cycles of radiotherapy and 6 cycles of chemotherapy combined with immunotherapy. However, both Professor Liu and Professor Xia had already prepared me for the worst: due to the nature of FAP, I might face a total colectomy and proctectomy, requiring a permanent stoma. And so, after much back and forth, I finally embarked on a long treatment journey.

Although I was unlucky, there were also fortunate things. Except for the only delayed chemotherapy session after the second cycle due to severe liver damage, which postponed the third cycle by 2 weeks, other complications and side effects did not delay any of my treatments. This good outcome was thanks to enthusiastic volunteers and group members who informed me in advance about potential issues with radiotherapy and chemotherapy before treatment began, allowing me to prepare accordingly. I am deeply grateful for this and thankful for all the beautiful encounters!

Throughout the neoadjuvant treatment, emotional fluctuations were inevitable. Whenever this happened, I would chat with my most trusted aunt. She always had ways to help me ease my anxiety. Thank you to my family and friends who have always been by my side, supporting and encouraging me!

「 V. Wishing Myself a Successful Surgery 」

At this moment, I have just completed my neoadjuvant treatment and am scheduled for surgery in June. Looking back on my treatment journey, I suddenly realize that I have gradually grown from a complete novice into a "half-expert" volunteer who can provide emotional support and comfort to fellow patients in our group.

I recall what my aunt said to comfort me when I was first diagnosed: When we were young, we thought unfinished homework was the end of the world. During college entrance exams, we believed failing meant our lives were over. After starting work, making a mistake made us feel incapable of anything. After a deep heartbreak, we felt the sky was falling.

But looking back, none of it really matters. Life is about overcoming one hurdle after another. What seemed like an abyss yesterday is just a casual conversation today. And the beauty of life lies in its endless hopes and unpredictable turns.

[ Mid-term follow-up MRI ]

I believe my journey is still long. Even if the road ahead is fraught with difficulties, I trust that perseverance will lead me forward. Finally, I wish myself a successful surgery and a swift recovery. In the future, I hope to follow Teacher Chengcheng's example and strive to live the most brilliant and authentic version of myself!

> Chengcheng's Story: Thirteen Years Fighting Advanced Gastric Cancer: Four Surgeries, Three Stomas, Yet Still a Romantic Life | Patient Story

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

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