Great Effort Brings Miracles: A Special Gene Colon Cancer Treatment Story | Patient Story

“The nickname 'Big Fish,' given to me when I first joined the group, is more than just a name; it symbolizes a responsibility and a mission.

Let us walk hand in hand, supporting and watching over each other as we continue our journey against cancer!

—————

Author｜Dali

Editors｜Xianning, Guangguang

A Sudden Dark Cloud

In the golden autumn of October 2023, my life was instantly shrouded by an unexpected dark cloud.

It was an ordinary morning. I stood in the corridor of my hometown hospital, tightly clutching a heavy diagnosis report—colon cancer. In that moment, my heart sank to the bottom, and anxiety and unease filled my family's faces. I was only in my thirties, completely unprepared. As my family and I looked at each other, panic had already spread between us. Facing this sudden blow, I chose not to give up. Right after the National Day holiday, I embarked on a journey to Beijing to seek medical help. Deep down, I longed for better medical resources and held firmly to my desire to survive. In this bustling and crowded city, I underwent comprehensive and detailed examinations, but every wait was a prolonged torment.

Meeting a Good Doctor

Through a friend's recommendation, I managed to book an appointment with Director Liang Jianwei from the Colorectal Surgery Department at the Cancer Hospital, Chinese Academy of Medical Sciences. During the consultation, Director Liang carefully inquired about my family medical history. Considering my young age, he immediately arranged more detailed and necessary tests, which would take about one to two weeks for full results. However, having just been diagnosed and terrified by the word "cancer," I actively requested to schedule surgery or chemotherapy as soon as possible to prevent the cancer from spreading irreversibly.

Director Liang considered my feelings from a patient's perspective and patiently comforted me. He told me that once a treatment plan is set, frequent changes are not recommended, and advised me to wait patiently for a few weeks. He also professionally explained that the tumor would not spread as rapidly as I feared. With Director Liang's reassurance, most of my fear dissipated. I immediately followed his advice and underwent genetic testing and immunohistochemistry. Fortunately, the wait was not in vain. In a way, I truly hit the jackpot—Microsatellite Instability-High (MSI-H), and I am a Lynch syndrome patient.

Editor's Note: Microsatellite Instability-High (MSI-H) is a special tumor genetic type. These tumors grow quickly but have a good prognosis, are less likely to metastasize, and have highly effective targeted treatments: immunotherapy. Lynch syndrome is a hereditary genetic defect. Patients carrying pathogenic Lynch genes are highly susceptible to various malignant tumors such as colorectal cancer, gastric cancer, ovarian cancer, and urinary system tumors before the age of 50. These tumors are often of the MSI-H type.

However, after saying "you Lynch patients," Director Liang shifted his tone and added a piece of news that surprised and complicated both my mother and me—I have a risk of hereditary cancer. This meant I not only had to face the immediate challenge but also constantly prepare for potential future cancer risks. I was terrified by his conclusion. Before I could ask, my usually silent mother suddenly spoke up to refute him. She believed that she had been healthy for over a decade without major or minor illnesses, and since she was kind-hearted, ate vegetarian food, and prayed to Buddha daily, she couldn't possibly pass cancer to her children. She simply didn't believe Director Liang's professional judgment at that moment and questioned, "Then why am I fine?" Director Liang calmly replied, "How do you know you are fine?" My mother was stunned into silence. As soon as we left the clinic, she rushed home to arrange tests. Fortunately, the results showed she was currently in good health. I thought it was enough that only I had to bear this misfortune.

Afterward, accompanied by my mother, we followed Director Liang's advice and promptly took the test results to consult Director Zhou Aiping from the Medical Oncology Department. This renowned expert in cancer treatment looked at me with eyes full of wisdom and warmth, as if she could see into every corner of my panic. Actually, facing the jargon-like descriptions on the report, I still felt lost and helpless when entering Director Zhou's clinic. She carefully read all my test reports, patiently explaining my condition as she went along. She told me that although I came a bit late, fortunately, based on the test results, I would definitely benefit from immunotherapy. This news was like a shot in the arm, slightly lightening my heavy heart. I seemed to see the tree of life stubbornly sprouting new buds in adversity, blooming with the green of hope. At the same time, noticing my worries about being a Lynch syndrome patient, she once again professionally analyzed the specific meaning of the genetic risk and provided corresponding advice. She told me that while the risk exists, it does not mean it will definitely happen. Now, through scientific monitoring and management, the risk can be effectively reduced to protect my own and my family's health.

Director Zhou's words greatly reassured me, but what excited me even more was that her team recommended I join a clinical trial for dual immunotherapy. This meant I could receive the most cutting-edge and personalized treatment plan. Especially when I learned that the cure rate with medication alone was as high as 70%, I felt incredibly encouraged. It was as if I saw a beacon lighting the path to recovery, filling my heart with gratitude and anticipation.

First Joining the Panda Group

Although the treatment started smoothly, I couldn't resist searching for related information online, and that's how the Panda Group entered my life. As a complete newcomer, I was full of curiosity and confusion. Even at midnight, the group's atmosphere remained lively, as if everyone refused to let this warmth and strength fade into the night. When I finally gathered the courage to share my situation in the group and attached the genetic test report that initially made me anxious, the shocked expressions of two group members, Songka and Memecha, instantly popped up on the screen. Their professional terms—high TMB value, MSI-H, dMMR—were like a string of codes that left me completely puzzled. A wave of panic rose in my heart: Does this mean my condition is terrible and hopeless?

Fortunately, Songka's words were like a spring breeze, instantly dispelling the gloom in my heart: "It's very clear, you're a 'Big Fish'!" Only then did I realize that behind these seemingly complex terms lay hope and possibilities for treatment. It turned out that difficult terms like MSI-H and dMMR meant I might respond well to immunotherapy!

Subsequently, Songka and other friends in the group showered me with blessings. The screen was flooded with "Congratulations" emojis. I happily sent a red packet so everyone could share the joy. Their optimism and open-mindedness deeply moved me. They also reminded me that I could join the Lynch Syndrome group, where I could learn more about my condition, explore the latest treatment ideas, and share recovery experiences.

After joining the Lynch group, I felt as if I had found another warm family. It gathered companions who shared my plight. Though we came from different places, we had a common goal—to defeat cancer and regain health. In this big family, I felt an unprecedented sense of belonging and strength.

Looking back at when I first joined, I was a newcomer full of confusion and anxiety about treatment. But fortunately, I met a group of enthusiastic volunteers like Sister Wan, Brother K, and Shenka. They not only patiently listened to my situation but also provided professional treatment advice based on my condition, filling me with confidence.

Mutual Support

In the group, I shared the news that I was about to undergo clinical treatment and received unanimous support and encouragement. Group members shared their own treatment experiences and insights, giving me a clearer understanding and preparation for the upcoming challenges. Meanwhile, I also updated the group on my clinical progress and gains, sharing this joy and hope with everyone.

The treatment process was long and arduous, but the atmosphere in the Lynch group was always filled with positive energy and motivation. Whenever a member shared good news, such as a tumor magically disappearing after a few immunotherapy shots, or a patient achieving a cure without surgery, these "miracles" inspired me to keep going. I began to realize that cancer is not invincible. As long as we maintain a positive mindset and cooperate with scientific treatment, we might become the miracle ourselves.

I continuously learned from the group's knowledge and maintained close interaction with members. We encouraged and supported each other, jointly facing the various difficulties and challenges in treatment. At the same time, I actively played my part by inviting other patients with similar conditions I met during clinical treatment to join the Panda and Lynch groups. I hoped that through my efforts, I could help more people find suitable treatment paths and defeat cancer together.

Within the group, I often proactively communicated treatment experiences with fellow patients, encouraging them to undergo treatment with peace of mind and trust in the effects of immunotherapy. I shared my treatment process, feelings, and every follow-up result, using my personal experience to tell them: as long as we persist in treatment and maintain a positive attitude, we will surely overcome the illness.

"Great Effort Brings Miracles"

When I first entered the clinical trial group, my heart was filled with anxiety and unease. Facing unknown treatment effects and potential side effects, I often felt fear and confusion. Late at night, I would repeatedly ponder my condition, worrying about poor drug efficacy. After two treatment cycles, when the doctor told me the tumor had significantly shrunk from 37mm to 13mm, I could hardly believe my ears. This astonishing drug effect thrilled me and made me deeply appreciate the magic of immunotherapy. This joy strengthened my determination to continue treatment and gave me more confidence to share my experience with fellow patients.

At the same time, fellow patients in the same clinical trial group around me kept sharing good news. Some saw significant drops in tumor markers, while others experienced obvious symptom relief...

As immunotherapy progressed, I not only witnessed significant tumor shrinkage but also felt changes from the inside out. My weight steadily increased from 134 jin (67 kg) at diagnosis to 170 jin (85 kg). This was not just a numerical change, but a direct reflection of health recovery. The anemia that once troubled me quietly disappeared, replaced by an increasingly robust physique and a more energetic mental state. My story inspired many patients. Because they believed the immunotherapy was highly effective and powerful, group members gave me a new nickname, "Dali" (Great Strength), because "great effort brings miracles."

The Battle Approaches

Although immunotherapy worked well, unfortunately, I experienced severe side effects. They became so intense that I couldn't continue the treatment. After four immunotherapy sessions, I had a serious discussion with my attending physician, Director Zhou, and we ultimately decided on surgery. Following the protocol, I first underwent preoperative imaging evaluation. The results revealed intestinal narrowing, and the imaging even suggested metastasis to mediastinal and retroperitoneal lymph nodes. This bolt from the blue caught me completely off guard. On the group's advice, I quickly sought consultations at both Peking University Cancer Hospital and the Cancer Hospital CAMS. Doctors at both hospitals recommended an additional PET-CT scan, which still highly suspected mediastinal and retroperitoneal lymph node metastasis.

At that time, right after the fourth dual immunotherapy shot, I was suffering from severe muscle soreness throughout my body due to a sharp rise in creatine kinase, accompanied by chills and other symptoms that made my life miserable. Director Zhou recommended hormone therapy to reduce the side effects. However, due to my stereotypical impression of hormones, I thought they weren't good and might even interfere with immunotherapy. So, after taking them for about a week, I secretly stopped. As a result, the symptoms worsened. While waiting with a heavy heart for Director Zhou to review the imaging report, she asked about my hormone treatment. I honestly confessed that I had stopped taking them and explained the additional adverse reactions that followed. Director Zhou sternly criticized my poor compliance but, based on my clinical symptoms combined with the imaging results, ultimately diagnosed it as an immune rebound reaction, finally ruling out mediastinal and retroperitoneal metastasis. This news undoubtedly brought me immense joy and relief. However, I ultimately paid the price for not following medical advice and stopping medication on my own: permanent hypothyroidism, requiring lifelong Euthyrox.

Through this ordeal, I completely realized my mistake. I began to actively cooperate with treatment, take medication on time, and closely monitor my body's changes.

When the colonoscopy results and pathology report after the 2024 Spring Festival were placed before me, my feelings were indescribable. Although the pathology showed chronic inflammation, suggesting the lesion might have disappeared, the narrowed state of the intestine reminded me that this battle was not completely over. After learning this, group members encouraged me, saying it was a positive signal and I shouldn't be anxious, but to ensure a radical cure, supplementary surgery was necessary.

As my physical condition steadily improved, I began preparing for the next challenge—surgery. Although there was inevitably some nervousness and unease, there was more anticipation and confidence for the impending victory. I knew surgery was a crucial step to radically cure cancer and the key to my rebirth. Therefore, I actively cooperated with the doctors' preoperative examinations and preparations to ensure my body was in optimal condition.

Radical Surgery & Complete Remission

Actually, when managing side effects at my local hospital, the local doctors, having never seen such an unconventional treatment approach, repeatedly emphasized that my attending physician was treating me chaotically and urged me to stop the medication immediately and opt for surgery to solve all problems at once. While lamenting the cognitive level of local hospital doctors, I quickly packed my bags and hurriedly returned to Director Liang Jianwei, who had initially provided my treatment plan. With his rich experience and professional attitude, Director Liang formulated a detailed surgical plan for me. Throughout this process, group members continuously cheered me on in the group, and every word of encouragement became my driving force forward.

Finally, on April 19, the day of my surgery arrived. Due to the numerous lymph nodes, the surgical process was exceptionally complex, lasting a full five and a half hours. Despite the major surgery, thanks to Director Liang's superb surgical skills, my young body, and resilient willpower, the surgery went very smoothly, and I recovered unusually quickly. During the week post-surgery, I actively cooperated with rehabilitation therapy, overcoming every hurdle, and was soon discharged smoothly.

When the medical oncologist sent me the image of the latest postoperative pathology report, I could hardly believe my eyes—T0N0 pCR! This meant the surgery had successfully removed all visible tumor tissue, and no cancer cells were found in the tumor tissue or lymph nodes, achieving pathological complete remission (pCR). This news was undoubtedly music to my ears and became an important milestone on my cancer journey.

When group members learned of this news, countless festive and firecracker emojis once again scrolled across the screen, overflowing with joy. I deeply know that this pCR pathology report does not belong to me alone, but to everyone who gave me endless support and encouragement on the path against cancer.

Passing Hope & Becoming "Big Fish"

As I gradually returned to normal life after surgery, a strong desire surged in my heart—I wanted to pass on the valuable knowledge and experience gained from this journey to more people in need. Whenever I recalled my initial confusion and helplessness upon joining the group, this idea became even firmer. Thus, I became a volunteer for the Panda Group and began my journey of "finding fish."

The nickname "Big Fish," given to me when I first joined the group, is more than just a name; it symbolizes a responsibility and a mission. I began to actively speak up in the group, sharing my treatment experiences, learned knowledge, and insights. I deeply understand that for many newly joined patients, this information might be the lighthouse they need most, helping them avoid detours and quickly find a suitable treatment path.

During group interactions, I particularly emphasized that colorectal and gastric cancer patients must undergo MMR immunohistochemistry after diagnosis. Due to my own Lynch syndrome and dMMR characteristics, I profoundly experienced the immense potential of immunotherapy in cancer treatment. I encouraged patients to complete as many tests as possible, including immunohistochemistry, before surgery to more accurately understand their condition and formulate a more personalized treatment plan. I also shared my successful experience of joining a clinical trial and using immunotherapy before surgery, hoping to inspire more patients to dare to try, giving themselves a chance to potentially avoid surgery, chemotherapy, and radiotherapy, and achieve a direct Complete Response (CR).

Gratitude & Blessings

Looking back at my entire treatment process, I met many like-minded friends. They were either fellow patients undergoing treatment, recovered "veterans," or silently dedicated volunteers. We supported and encouraged each other, jointly building a warm and positive community environment. I feel deeply honored to be a member of this big family, fighting side by side with everyone and facing the challenges on the cancer journey together.

In the Panda Group, I found a sense of belonging and strength, learned how to bravely face illness and difficulties, and had the opportunity to transform my experience into a force to help others. Therefore, I sincerely thank every friend in the Panda Group. It is you who taught me gratitude and giving back, and it is you who made my life more fulfilling and meaningful.

Finally, I sincerely wish every patient a speedy recovery and rebirth; I also wish every friend in the Panda Group constant good luck, happiness, and health. Let us walk hand in hand, continuously moving forward and watching over each other on the path against cancer!

Editor's Note: We are continuously collecting treatment stories and emotional reflections from Panda Group members, using words as an outlet for emotions.

For submissions, please contact: Guangguang, WeChat ID: saturnisa

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