A Joyful Life with Lynch Syndrome Colorectal Cancer | Patient Story
Be careful what you wish for, as the heavens might grant it in strange ways.
Based on past life experiences, I've always considered myself lucky, so I occasionally make wishes to the universe. Like two years ago, when my career hit a rough patch, I thought every day: Just retire! Lie flat! Enjoy retirement! I really don't want to work anymore!
Then, the heavens listened again.
Author｜Ali
Just before Christmas 2022, almost everyone in Shenzhen caught COVID-19. My partner and I promised to go out for steak to celebrate once I recovered. At the time, the internet was flooded with posts about different viral strains. I guessed I had the "diarrhea strain" because I experienced continuous diarrhea after testing positive.
By January 2023, I couldn't take it anymore, so my family took me to Shenzhen Third People's Hospital for inpatient tests. Looking back at my first colonoscopy, I cried out in pain from midnight until morning. After getting an expedited colonoscopy, a rectal mass was diagnosed. The report showed it was nearly causing a semi-obstruction.
I clearly remember my parents crying loudly in the hallway, yet they refused to tell me the results. They just said I had a huge hemorrhoid (which seems funny now), wiping tears while saying they would pull strings to get me transferred to Shenzhen Second People's Hospital for immediate surgery.
At the Second Hospital, I saw the Third Hospital's report on my phone. When the line "Rectal ca, tumor 6cm from the anus" caught my eye, I wasn't too surprised. After all, my parents' breakdown couldn't have been tears of joy over a hemorrhoid.
Looking back, I didn't feel overwhelming sadness or despair at the time. I was still too young, and my innate pride made me unwilling to give up so easily.
While waiting for surgery at the Second Hospital, I started researching through various channels. Thanks to Xiaohongshu, I discovered the Panda Group. Reading posts from group members, I learned that colorectal cancer isn't necessarily a death sentence and can still be cured. Without a clear stage, I didn't focus on survival rates. Summarizing online advice, the key was "neoadjuvant therapy," and I began studying this concept in depth.
During my second hospitalization at the Second Hospital, my diarrhea had lasted over a month. I later learned that the constant urge to defecate without success is called tenesmus. The doctor had already expedited my surgery schedule, but I only had an enhanced abdominal CT. He couldn't guarantee a 100% chance of sphincter preservation for a 6cm tumor. Group members advised me to complete more tests or seek a higher-level hospital. Dr. Xiao Han also gave me valuable advice.
Honestly, if the doctor had been confident about sphincter preservation, I would have proceeded with surgery. But his uncertainty made me unwilling to gamble. I wasn't mentally prepared for a permanent stoma at such a young age.
Under pressure from everyone, I kept asking doctors if I could try neoadjuvant therapy first. Unfortunately, none agreed, and some even reprimanded me strictly. So, I decided to follow the group's advice and go to Guangzhou.
「 Diagnosed with Retroperitoneal Metastasis in Guangzhou 」
Before the Spring Festival, following my family's advice, I consulted Professor Ren at the Sixth Affiliated Hospital of SYSU. Professors Chen Gong and Ding Peirong also had available appointments, but I followed my family's arrangement. After this experience, I decided to take responsibility for my own medical journey and no longer blindly follow family advice.
After consulting Professor Ren, he simply assured me that sphincter preservation was fine and admitted me a few days later. He instructed me to undergo tests during the New Year holiday and schedule surgery right after. So, I repeated all the tests at the Sixth Hospital, which confirmed the stage: Rectal cancer T4aN2bM1 (retroperitoneal lymph node metastasis). Only then did it truly sink in: I was actually Stage IV.
But I had no time for self-pity. My family had already decided to move from Shenzhen to Guangzhou to fully support my treatment, and urged me to stick with the Sixth Hospital to avoid further hassle. However, as tests progressed, the attending doctor still refused neoadjuvant therapy, suggesting only four cycles of XELOX before surgery. Hearing this, combined with my own research, I wanted to leave again. But with the New Year approaching and my diarrhea unresolved, I just had one chemotherapy session (Oxaliplatin + Capecitabine) and went home. That was probably my weakest period during treatment.
During the New Year, things took a turn. My childhood friend's mother contacted me, saying a colleague was a former patient of Professor Chen Gong, and helped me connect with him. I could see him at Sun Yat-sen University Cancer Center (SYSUCC) after the holiday, which led to another big argument with my family, as SYSUCC would be my fourth hospital.
Worried that my hospital-hopping would delay treatment, I promised my mother that Professor Chen Gong would be my last doctor. If he also disagreed with neoadjuvant therapy, I would stop insisting.
On the eighth day of the New Year, I finally met Professor Chen Gong in the clinic, my future lifesaver. After hearing my medical journey, he immediately called the Sixth Hospital's pathology department to expedite my PCR fluorescence test results. He personally called to tell me I had a special genetic type: MSI-H. Only at this moment did my medical journey finally get on the right track.
Looking back, whether it was my physical pain or my family's breakdown, all the hardships seemed to instantly dissolve. I finally found a new treatment path that might allow sphincter preservation without surgery. This miracle, as others see it, was only possible because of how fiercely I fought to grasp it.
I finally regained a calm mindset to process my torn emotions. I also moved from the Panda Low-Position Group 1 to the Lynch Syndrome Group 1 to learn everything about Lynch syndrome and immunotherapy.
Everyone in the group shared their treatment experiences openly. Knowing I was a young patient, they gave me extra encouragement and warmth. This is why, even after being cured, I want to stay in the group to help more comrades like me.
「 Successfully Cured, Stage IV Downgraded to Stage III 」
Professor Chen Gong referred me to Professor Li Dandan for immunotherapy. When Professor Chen went to Lanzhou for support work, my follow-ups and CCR evaluations were taken over by Professor Ding Peirong.
I underwent 1 cycle of chemotherapy and 12 cycles of immunotherapy (12 doses of K-drug + 4 doses of Y-drug). The main side effects were a week of rash, a week of liver damage, and potentially lifelong hypophysitis. I also feared alopecia areata the most due to my vanity, but compared to a cure and successful sphincter preservation, these were no longer insurmountable.
After a CCR evaluation in August, I received 3 doses of single-agent immunotherapy. To my delight, Professor Ding noted that the metabolic activity of my retroperitoneal lymph nodes hadn't changed much before and after treatment, so he concluded I didn't have distant metastasis. I was actually a Stage III patient!
In November, I had my regular follow-up and safely passed again. From now on, I just need colonoscopy, MRI, CT, and blood tests every 3 months.
Compared to chemotherapy, my experience with immunotherapy was quite manageable. After my cancer diagnosis, I truly understood the meaning of "carpe diem." I spent a few months exploring Guangzhou, then traveled to Dalian, Xinjiang, Malaysia, and Nanjing.
I was incredibly happy during this time. My diarrhea disappeared after the first single-agent immunotherapy. It wasn't until I returned home from Nanjing in November that I experienced near-total scalp alopecia areata, which finally made me stay home to rest and recover.
「 Optimism Defeats All Hardships 」
I am naturally optimistic. Even during my illness, I never suffered from insomnia. I could eat, drink, and sleep well (except during chemotherapy). I'm not afraid of death, but I feared surgery and a stoma. That's why I strongly supported Watch & Wait (WW) after CCR.
At 33, I currently have no savings or job, but I have wonderful family, a partner, and friends. I remember my first meal out with a friend after diagnosis. Seeing my frail state, she joked, "You really look like a cancer patient!" I burst out laughing. I'm grateful for her bluntness and touched by her unwavering support. Though she didn't say it, I know she cried all night when she first heard my diagnosis.
I hope my hair grows back quickly soon, so I can continue creating a happy life with my beloved family and closest partner.
To protect patient privacy, names used in this article are pseudonyms.
Images containing the patient's portrait are used with authorization and may not be reproduced without permission.
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