After 22 Years, Husband with Lynch Syndrome Faces Cancer Recurrence: Achieves Clinical Cure with Immunotherapy After Opting Out of Surgery | Patient Story
Xiaomifeng met her husband in 2003. On their second meeting, she stayed by his side all night after his surgery. Over two decades later, she stands at another "second" crossroads: a second cancer diagnosis and another critical choice.
In 2003, a "stranger" held his hand. In 2025, a group of strangers held theirs.
Author: Xiaomifeng | Editor: Chanchan | Reviewer: Guangguang
「 Part I: Abdominal Hernia: A Lump That Can Be Pushed Back 」
In Shanghai in March 2025, the plum rain season hadn't arrived yet, but the air carried a lingering dampness. After his shower, my husband pointed to a fingernail-sized bulge in his groin, his tone as casual as if commenting on slightly salty food: "Look, there's a lump here. It shrinks back when I press it."
I leaned in to touch it, feeling the soft mass beneath his skin, and didn't think much of it. He turned to dry his hair. Amid the hum of the hairdryer, I stared blankly at my fingertips, which still seemed to hold the sensation of the lump. It felt like a tiny needle gently pricking my heart. For 22 years, that needle had never truly been pulled out.
Now 48, he has lived with a stoma for 22 years since his rectal cancer surgery in 2003. His follow-ups had always been stable. Over the years, we learned to live with the disease, or rather, learned to pretend it didn't exist.
Still uneasy, I looked it up and learned it was an inguinal hernia, which generally cannot heal on its own. Medication, ointments, or abdominal binders wouldn't solve it, so we decided on surgery as soon as possible and were admitted to Huashan Hospital, Fudan University.
During the preoperative exams, the doctor noted he hadn't had a colonoscopy in all these years and recommended one.
We were both stunned. After his 2003 surgery, every follow-up only involved CT scans and blood tests. No doctor had ever suggested a colonoscopy. He had always believed that patients with a stoma couldn't undergo one.
On the day of the exam, I sat in the corridor outside the endoscopy center at Huashan Hospital for two full hours. People came and went, their footsteps, conversations, and the beeping of machines intertwining into a headache-inducing noise. I kept scrolling through my phone, unable to absorb a single word on the screen. A voice inside me kept saying: It's fine. It's been 22 years. It must be fine.
But another voice was screaming nonstop.
When he walked out with the report, his face was ashen, like a piece of paper soaked in water. His lips moved, his voice barely audible: "The results aren't good."
My head buzzed. Looking at the familiar yet alien hospital corridor, and at the man I had lived with for 22 years, it felt as if everything had returned to that spring of 2003, when SARS was raging.
「 Part II: First Cancer Diagnosis in 2003, Growing Closer and Staying Together After Radical Rectal Cancer Surgery 」
In the spring of 2003, the shadow of SARS loomed over the country. I saw him for the second time in a hospital ward.
Our first meeting was at a friend's card game. He wore a crisp white shirt, spoke little, and had long fingers when playing cards, offering only a gentle smile when he lost. When I saw him again, he had just undergone radical rectal cancer surgery and had a stoma on his abdomen. He was completely alone. His parents were stranded out of town due to the epidemic, his girlfriend had broken up with him shortly after his diagnosis, and his colleagues had pooled money to hire a caregiver. Once they confirmed the surgery went well, they all left.
I don't know how I pushed open that ward door. Perhaps it was youthful boldness, or perhaps a quiet arrangement by fate. When I entered, he was in a deep sleep, swallowed by an oversized white hospital gown. The IV fluid dripped drop by drop, tapping against the silent air. We were still strangers, but in that moment, I chose to become his family.
That night, he developed a fever. I used warm towels for physical cooling, but they cooled down the moment I took them out of the hot water. Afraid he'd catch a chill, I filled the basin with boiling water, holding both ends of the towel and blowing on it frantically. The steam made my eyes red and my fingers numb. His mouth was terribly dry, but he couldn't drink water, so I used cotton swabs dipped in warm water to gently moisten his cracked lips.
At midnight, heart-wrenching sobs suddenly came from the next ward. A young man about his age had fainted after exercising and never woke up. The cries pierced my heart like a knife. Having never cared for anyone before, I trembled with fear but dared not make a sound. I could only grip his hand tightly, sitting on the chair by his bed, watching the sky outside slowly brighten.
As dawn approached, his fever finally broke. He opened his eyes, looked at me, and didn't ask who I was or why I was there. I didn't say anything either.
After that, I ran to the hospital whenever I had free time. I made him congee, helped him wash, and kept him company. He still spoke little, always listening quietly, occasionally nodding or offering a faint smile.
Gossip soon spread. A classmate specifically sought me out: "Think it through. He's had cancer. If it recurs in middle age and you're left alone with a child, how will you explain it to your parents?" I stayed silent. An aunt tactfully asked: "Your boyfriend seems honest, but is his health not so good?" I could only make up vague excuses.
Truthfully, I was terrified inside. But watching him try to eat, read seriously, and smile at the sunlight outside the window, I simply couldn't bring myself to turn away.
In 2006, we got our marriage certificate. No wedding, no diamond ring, just two red booklets. In the first few years of marriage, we didn't dare to have children. He didn't say it, and I didn't ask, but I knew he was afraid that if something happened to him, I'd be left alone.
During those years, we guarded this secret together. We sought security in each other's eyes, pretending the shadow didn't exist. Just like that, 22 years passed.
「 Part III: Colon Cancer Recurrence Discovered Before Hernia Surgery 」
"A mass was found in the descending colon, highly suspected to be malignant, with enlarged lymph nodes nearby." The doctor's words seemed to come from far away, pulling me back from my memories to reality. I heard my own voice ask: "What do we do? Can he still have surgery?" The doctor replied: "It's hard to say right now. Let's wait for the pathology report first."
Back in the ward, a doctor from Huashan Hospital happened to be staying in the same room. Clinging to a lifeline, I grabbed his hand and asked: "Doctor, can you tell me which hospital in Shanghai is best for colon cancer? Which doctor is the most skilled?"
He comforted me: "Don't worry. Since you're here, it's fine to stay and be treated at Huashan. Treatments are very standardized and mature now. If you transfer hospitals, deal with the hassle, and wait in line, you need to consider if you can afford the delay."
Hearing this, I completely lost control. I ran to the end of the corridor, crouched on the floor, and wept bitterly. I wasn't afraid of the hassle or the waiting. I was afraid that I didn't even know which direction to turn. With no medical knowledge or doctor connections, in this massive hospital, I felt like a lost ant, tiny and helpless.
Naively, I ran to ask the attending doctor if the hernia surgery and tumor surgery could be done together. Looking back, it was such an absurd question, but at the time, it was the only "solution" I could think of.
The doctor shook his head: "No, they are different types of surgery. Wait for the pathology first. The tumor takes priority."
The hernia surgery was temporarily off the table. We packed up and went home. The moment we walked in, I called my son over, took out my phone, and started recording videos of the father and son. Seeing me cry, he asked curiously: "Mom, what's wrong?" I wiped my tears and forced a smile: "Nothing, Mom just wants to record more videos of you two." I wanted to preserve more memories, even absurdly thinking that maybe AI could help me later, keeping his voice and his face with me forever.
That night, I was completely sleepless. Various fears washed over me like a tide: on one side, the image of him suffering in the future; on the other, my helplessness raising a child alone. The bone-deep terror made me shiver with cold.
Around 2 or 3 a.m., tossing and turning, I got up and walked to the living room. I opened my phone and frantically searched for everything about colon cancer. Right then, a term kept appearing on Xiaohongshu: "Panda Group."
「 Part IV: First Joining the Panda Group, First Learning About "dMMR", and Being Told a New "Stoma" Would Be Needed After Transferring Hospitals 」
At first, I thought the "Panda Group" was some kind of sales or scam organization. But after reading several posts, everyone praised how good and professional the group was. With a try-it-out mindset, I followed their official account and started reading their educational articles.
Reading through them one by one, my panicked heart gradually calmed down. So colon cancer isn't incurable; different stages have different treatment plans. There's even immunotherapy... For the first time, I realized that having cancer doesn't mean just waiting for doctors to schedule surgery or chemotherapy. Patients and their families also have the right to choose.
Following the instructions on the account, I submitted my documents and applied to join the Panda Group. Joining required strict verification to ensure everyone was a real patient or family member. This made me feel the group was highly legitimate and reassuring.
The next day, I successfully joined. As expected, everyone in the group was earnestly sharing medical experiences and helping each other. Volunteers patiently answered every question, reviewed reports, recommended doctors, and explained treatment plans.
I looked at the names on the screen: Qiuyu, Dashan, Yaya... They were strangers. Just like I was a stranger to my husband back in 2003.
But in that moment, I suddenly understood my 2003 self. These strangers could have turned away, but they didn't. They stayed, holding the hands of every new member in this virtual ward.
In the group, I learned that although Huashan Hospital is a top-tier Grade 3A hospital in Shanghai, oncology isn't its specialty. I decided to quickly change hospitals and doctors. As soon as I joined, I posted the colonoscopy report. Soon, a volunteer replied, telling me what to do next and which doctor to see. But when I opened the appointment platform, all the experts' slots were booked far into the future.
For a newly diagnosed cancer patient, any wait feels too long. The volunteers in the group told me again: "For newly diagnosed patients, many doctors can add extra appointments. Just go to the clinic door, tell the doctor's assistant you were just diagnosed and can't get a slot, and beg for help. They usually add you."
I was stunned. Always timid and rule-abiding, I never dared to cut in line, push forward, or beg doctors. In the past, if a doctor said appointments were full, I would just obediently leave without asking another word.
But this time, there was no turning back. The next day, we decided to try our luck with Director Xu at Zhongshan Hospital, Fudan University. The Department of General Surgery at Zhongshan Hospital is one of the most authoritative in the country, and Director Xu is a leading expert in colon cancer.
We arrived at Zhongshan Hospital early in the morning. The outpatient hall was filled with hurried patients and families. I took a deep breath, gripped my medical record tightly, and walked to Director Xu's clinic door.
The clinic door was tightly closed, with voices of doctors and patients coming from inside. I lingered at the door for a long time, palms sweating, wanting to turn back several times. Finally, the door opened. I quickly stepped forward to stop the assistant from closing it, my voice trembling: "Doctor, hello. We were just diagnosed with colon cancer and can't get an appointment. Could you please help us add one?"
The appointment was successfully added. By past 5 p.m., we finally saw the doctor. Director Xu carefully reviewed our records and said: "First, do immunohistochemistry. Borrow the pathology slides from Huashan Hospital, and we'll redo them here. Once the results are out, we'll arrange hospitalization for surgery." Back then, the term "immunohistochemistry" was completely foreign to me. I just wanted surgery done quickly, to cut it all out cleanly like in 2003.
While learning in the Jiangsu-Zhejiang-Shanghai group, I casually mentioned that this was his second colon cancer, and his sister had also been diagnosed with colon cancer previously. A volunteer immediately replied: "Then you are very likely dMMR. That's hitting the jackpot!" I didn't take it seriously at the time. We were already so unlucky; what jackpot could we possibly win?
After pulling many strings, we finally received the hospitalization notice. But during the preoperative consultation, the doctor said: "This time, the lesion is in the descending colon, requiring an extended resection. The original stoma site needs to be moved to the exact center of the abdomen."
I was completely stunned again. At age 27, his stoma was placed on his lower abdomen, easily hidden by clothes. Over the years, he had grown accustomed to that location and this way of life. But now, moving it to the very center of his abdomen, the most conspicuous spot, how would he work? How would he face people? How would he socialize?
Just thinking about it made my heart ache for him. Why was heaven so cruel to such a good, honest, family-oriented man? He had already suffered so much; why make him suffer again?
But saving his life was paramount. We had no choice but to agree.
「 Part V: Immunohistochemistry Shows "dMMR", Surgery Urgently Halted to "Spare the Patient" 」
Preoperative fasting, skin preparation, and various exams were all proceeding step by step. The tumor site had already been marked. The next day was the surgery.
Just then, I received the immunohistochemistry report, which showed two "deficiencies". My heart skipped a beat. I felt like I had seen this result in the group before.
I immediately posted the report in the group. Within seconds, it exploded. "Congratulations! It's dMMR! You really hit the jackpot!" "Absolutely no surgery! Don't operate yet!" "Hurry and find the doctor to stop the surgery!"
Staring at the screen full of messages, my mind went blank. I felt a little happy, but mostly panicked. The doctor would soon come for us to sign the surgical consent form. What should I do?
At that moment, Sister Qiuyu, a volunteer in the group, sent me private messages, one after another, explaining what Lynch syndrome is, what dMMR is, and why immunotherapy works so well for such patients. Several fellow patients also shared their own immunotherapy experiences.
"Immunotherapy"—another completely new term. While frantically searching through Panda Group materials on Lynch syndrome and immunotherapy, I kept reading the group messages. Everyone repeatedly urged me: "Please, please don't have surgery first. Try immunotherapy first!"
It turned out that dMMR is a special type of tumor with a genetic deficiency. Immunotherapy generally works very well for these patients, and many can even achieve cCR (clinical complete response) without surgery. Moreover, the vast majority of Lynch syndrome patients are dMMR.
With two colon cancer histories and a family history, the probability of my husband having Lynch syndrome was extremely high. I then joined the Lynch group, filled with patients and families just like us. Yet, my heart remained uneasy. Could I gamble? What if immunotherapy didn't work? What if delaying surgery allowed the tumor to progress? This decision concerned his life; I couldn't afford to lose.
Sister Qiuyu was so anxious she couldn't type clearly and called me directly. She talked with me for over an hour, covering treatment principles, side effects, successful cases, and precautions. She also recommended two doctors knowledgeable in immunotherapy for me to consult. Sister Yaya also chatted with me for a long time, cheering me on.
In just a few hours, I desperately digested all the information. Both doctors I consulted unanimously recommended prioritizing immunotherapy. I finally gathered the courage to tell the attending doctor: "We won't have surgery. We are dMMR and want to try immunotherapy first."
The attending doctor was surprised, stopped his work, and said to me: "Who told you that? Immunotherapy is only used when there are no other options. If you don't have surgery now and wait for the tumor to grow, coming back later won't be at this stage."
I was speechless and fear crept back in. The doctor said he couldn't make the decision and told me to find Director Xu myself.
I returned to the ward in a daze. After my husband listened to the group members' explanations, we reached an agreement: no surgery for now, go home to research immunotherapy, and if it fails, we'll find a surgeon later.
I was timid and didn't dare approach Director Xu directly. I lacked the professional knowledge to confidently refuse surgery. But behind me stood the Panda Group, along with professional doctors and volunteers. They gave me the courage time and again.
I eventually walked into Director Xu's clinic, my voice trembling: "Director Xu, our immunohistochemistry results are out. We'd like to temporarily hold off on surgery and consider other options."
After reviewing the report, Director Xu said: "Since it's dMMR, there are two paths: surgery or immunotherapy. You choose."
I said: "We'll go back and think about it first."
Director Xu was straightforward: "Nothing to think about. If no surgery, you can be discharged now."
I quickly nodded: "Okay, okay."
The moment I stepped out of the clinic, my legs were so weak I could barely stand. I leaned against the wall, gasping for air, my heart pounding, my face burning hot. Without the Panda Group, without everyone desperately holding me back, I would never have had the courage to make this life-changing decision.
[Discharge Summary]
「 Part VI: Undergoing Immunotherapy, Consecutive Negative MRD Tests, and "Clinical Cure" After 10 Immunotherapy Sessions 」
After discharge, on the recommendation of group members, we found Director Liu in the Colorectal Surgery Department at Fudan University Shanghai Cancer Center. Upon seeing our records, he smiled and said: "This is your second occurrence, with a clear family history. In the hands of any immunology-savvy expert, immunotherapy is the priority. It was very wise of you to stop in time and not rush into surgery."
He also said: "You are unfortunate, yet also fortunate. The unfortunate part is that if the tumor locations were swapped, you might not have needed a permanent stoma. The fortunate part is that with immunotherapy now, there's a chance to achieve cCR, or clinical complete response, which has a much smaller impact on daily life."
Director Liu explained the immunotherapy plan and potential side effects in detail. He also recommended we join an MRD clinical research group. MRD stands for "Minimal Residual Disease." MRD testing mainly focuses on ctDNA (circulating tumor DNA) mutations, capable of detecting extremely small amounts of residual cancer cells after treatment that routine exams like CT or colonoscopy cannot find. It is currently one of the most precise indicators for judging cancer treatment efficacy and recurrence risk, and is usually quite expensive. After joining the group, we could get MRD testing for free. Later, we also completed genetic testing, which revealed an MLH1 germline mutation, confirming my husband's Lynch syndrome diagnosis.
[Clinical Trial Informed Consent Form]
[Genetic Test Report]
In April 2025, my husband began his first immunotherapy session. The treatment was much simpler than we imagined: just an IV drip that finished in an hour, with no discomfort at all.
My suspended heart relaxed a little. However, during the follow-up after the first session and before the second, the MRD value actually increased. I fell into extreme anxiety again, unable to eat or sleep, fearing if we might be MSS within dMMR? I repeatedly pestered the MRD testing staff about the genetic report timeline, and ran to ask Director Liu: "Why did other patients' MRD drop significantly after their second session, while ours increased?"
Director Liu was very patient. He sent me several cases, saying: "Look, these patients all had increased MRD after their second session. This is called a 'pseudo-elevation', where immune cells are fighting tumor cells. Don't worry too much, let's wait and see."
My husband also comforted me: "Trust Dr. Liu, and trust me. We will get better."
Those three weeks felt as long as three years. Finally, the third MRD result came out: cleared to zero.
[ctDNA Level Tracking]
Holding the report, I stood in the hospital corridor and wept with joy. All the past fear, anxiety, and helplessness melted into scalding tears at that moment.
The subsequent treatments went very smoothly. My husband continued working normally, going to the hospital for treatment and follow-ups on schedule. I kept learning in the Lynch group, drawing strength from the good news shared by fellow patients. I constantly worried about various immunotherapy side effects: myocarditis, pneumonitis, hypophysitis... Whenever they were discussed in the group, I carefully noted them down in a notebook, terrified of not knowing how to handle them if they occurred.
Until after the 9th session, he developed a rash. At first, we thought it was just a common drug rash and didn't pay much attention. But the rash worsened, covering his body with blisters so painful he couldn't sleep. After several visits to the dermatology department, it was finally diagnosed as an immune-induced bullous skin disease.
After completing the 10th immunotherapy session, we paused treatment as advised by the doctor to focus on the skin issue. Fortunately, after some time of treatment, the rash gradually improved.
This February, we sought an evaluation from Director Ding at Sun Yat-sen University Cancer Center. After reviewing the CT, colonoscopy, and consecutive negative MRD tests, Director Ding determined that he had achieved cCR.
This journey finally drew a perfect conclusion just before the Lunar New Year.
「 Part VII: "Stranger" "Family", Those Who Hold My Hands Can Hold Yours Too 」
Later, chatting with a classmate, she was surprised: "How did you become so professional now? Talking so clearly about dMMR, MSI-H, cCR."
I smiled and said: "I only know the surface. The doctors and volunteers in the Panda Group are the truly professional ones. They taught me all of this."
As I write these words, the sunlight outside the window is just right. My husband is cooking in the kitchen, the clinking of pots and pans the most beautiful music in the world. My son is doing homework in the living room, the gentle rustling of his pen on paper bringing peace and tranquility.
A year ago, I wouldn't have dared to dream of this ordinary happiness.
The words I most want to say are just two: Gratitude.
I am grateful for meeting the Panda Group, and for Director Han's great love in building such a warm and professional extended family. I never imagined that a group of complete strangers would willingly teach me professional knowledge for free, review my reports, accompany me in making decisions, and hold on to me tightly when I was at my most broken.
Thank you, Sister Qiuyu, Dashan, Sister Yaya, and every fellow patient and volunteer in the group who lent a hand. It is you who gave us hope and courage.
In 2003, I held his hand. Back then, I was a stranger to him, but I chose to stay.
In 2025, a group of strangers held my hands. They chose to stay, becoming family to walk with me through the darkest path.
This is fate's response. Courage is passed on, from one person to a group, from the past to the future.
I share this experience to pass on courage to every patient currently going through it:
· A diagnosis is not terrifying. Choosing the right path, finding the right people, and selecting the right plan are more important than blind surgery.
· Keep learning and face each step calmly. Do not be afraid, do not despair. You are not fighting alone.
· Even with Lynch syndrome, there is no need to fear. There are increasingly advanced treatments now, and more and more people are gaining a new lease on life.
May every patient avoid unnecessary detours, may every family find peace and smooth sailing, and may every Lynch patient meet the right partner. May everyone in despair also meet that group of strangers willing to hold your hand.
To protect patient privacy, names in this article are pseudonyms.
Images containing patient portraits in this article are used with patient authorization and may not be used without permission.
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