Late-Stage Appendiceal Adenocarcinoma: Repeatedly Advised to Enter Hospice Care | "Dad, We Won't Give Up" | A Patient's Story

Author | Zhong Lala

Editor | Zhong Lala

Reviewer | Guangguang

「 I. Annual Checkups, Yet Diagnosed with Appendiceal Adenocarcinoma 」

In March 2021, my father’s routine checkup at Zhangzhou Third Hospital showed appendicitis on the CT scan. In May, he underwent surgery for it, but the procedure unexpectedly revealed a ruptured appendix with widespread abdominal metastasis. Rapid pathology initially indicated appendiceal adenocarcinoma. A routine post-checkup surgery abruptly unveiled the curtain on this appendiceal malignancy.

Later, doctors informed us that the tumor had been quietly growing inside him for five or six years. Despite annual checkups and consistently normal tumor markers, it left no trace. This is the most challenging aspect of appendiceal adenocarcinoma: its extreme stealth. Even when it progresses to late-stage metastasis, it may cause no obvious symptoms.

In June, my father went to the Cancer Hospital of the Chinese Academy of Medical Sciences for a detailed pathological review, which ultimately confirmed a diagnosis of low-grade goblet cell adenocarcinoma of the appendix. The tumor had invaded the full thickness of the appendiceal wall, extended to the hepatoduodenal ligament and parts of the greater omentum, and showed vascular tumor emboli and perineural invasion. Immunohistochemistry revealed Ki67 at 40%, PD-L1 negative, and HER2 negative.

Discharge diagnosis: Appendiceal malignancy cT1NxM1 Stage IV, with multiple metastases to the peritoneum, omentum, and mesentery, accompanied by enlarged right axillary lymph nodes and ascites. The disease had reached an advanced stage.

Heishi was the last person in the family to learn the truth.

“From his diagnosis in early May until I accidentally found out from my cousin at the end of the month, my parents kept it hidden from me for a whole month. I naively thought they were traveling to Beijing and enthusiastically sent him lots of travel guides. I was just so foolish.”

Heishi deeply regretted not seeing through the lie of “everything is fine” on the phone earlier, and for ignoring their forced casualness.

Fortunately, Heishi played along with her parents’ wishes, pretending to know nothing, and joined them in this tender charade where neither wanted to burden the other.

This mutual concealment lasted until the summer vacation, when Heishi returned home. Just as her mother was about to speak earnestly, Heishi’s simple “I know” broke the silence, finally giving all the pent-up emotions a place to flow.

「 II. Seeking Medical Care Across Cities, Misdiagnosis Nearly Caused Disaster 」

After the diagnosis, Dr. G at the Cancer Hospital of CAMS designed a first-line chemotherapy regimen of 4 cycles of Bevacizumab + XELOX for my father. In June 2021, he began his first cycle there.

However, after the third cycle, due to the pandemic in Beijing, my father had to return to Zhangzhou, Fujian, to continue treatment. The local hospital adjusted his subsequent chemotherapy plan based on standard colorectal cancer protocols.

From November 2021 to April 2023, my father underwent multiple cycles of chemotherapy, including Bevacizumab + Capecitabine, Bevacizumab + FOLFIRI, and FOLFIRI alone, before finally switching to oral S-1 monotherapy for maintenance.

During nearly two years of chemotherapy, the tumor progressed relatively slowly, and my father’s condition remained fairly stable.

“At that time, I was still in college. My mother initially handled all his hospital visits. For the first two years, his side effects weren’t severe—no major hair loss or vomiting, just some numbness and darkening of his hands and feet from capecitabine. This gave us a false sense of relief, and we had no idea we were facing a brutal war.”

[My father's darkened hands after chemotherapy broke Heishi's heart]

During the Spring Festival of 2022, about a year after diagnosis, his condition began to progress. The first-line treatment was switched to second-line, and soon to third-line. One day, my father suddenly said to Heishi, “This illness might only give me a year or two.”

Those words hit Heishi like a heavy stone. It was the first time she truly realized that this disease could actually take his life.

To make matters worse, during third-line treatment, the local hospital misdiagnosed him, mistaking appendiceal adenocarcinoma for appendiceal carcinoid tumor, and prescribed a regimen of Cisplatin + Etoposide + Sintilimab, originally planned for 4 cycles.

After the first cycle, my father experienced severe physical discomfort for the first time: a rapid increase in ascites, difficulty eating, and even bloating after drinking water. Heishi immediately stopped this treatment plan.

“That moment made me completely understand how crucial it is to find the right doctor and the right treatment for rare diseases. We took my father to Xiamen, then back to Beijing, filing complaints and reviewing everything. Our hearts were filled with regret, wishing we had known more earlier to get the right treatment sooner.”

「 III. Traveling North for a Chance at Survival, Cytoreductive Surgery Brings Hope 」

In May 2023, my father was transferred to the First Affiliated Hospital of Xiamen University. A cytoreductive surgery was planned, but a preoperative PET-CT revealed metastasis to the left supraclavicular, pelvic, bilateral iliac, and bilateral inguinal lymph nodes (largest ~1.4cm), along with widespread peritoneal seeding and massive ascites in the abdomen and pelvis. The surgery had to be canceled.

The chief surgeon shook his head, saying, “Distant metastasis significantly increases surgical risk, and the large incision would make postoperative recovery extremely difficult.”

In our despair, a word from Dr. Chen in the internal medicine department woke Heishi up: “Beijing Aerospace Center Hospital has a specialized mucinous tumor department that treats cases exactly like your father’s. Go and fight for it; there might still be a glimmer of hope.”

By chance, Heishi finally joined a professional appendiceal adenocarcinoma patient support group. Fellow patients shared advice and unanimously recommended Beijing Aerospace Center Hospital.

From that point on, Heishi truly stepped into her father’s treatment journey: putting aside her college courses, diving into patient groups, and frantically studying everything about appendiceal adenocarcinoma from scratch.

Heishi realized that the depth of understanding determines the depth of treatment. Advice from fellow patients and medical information from across the country became a guiding light on her once-confused path.

After discharge in Xiamen, Heishi and her father immediately headed north to Beijing Aerospace Center Hospital.

It was there that Heishi heard the most reassuring words during that period. Dr. Xu told her, “Although the optimal surgical window has passed, there is still a chance for surgery. This is an indolent cancer; it doesn’t grow very fast, but it isn’t very sensitive to chemotherapy. Even with metastasis, as long as the patient’s physical condition can withstand it, it’s never too late for surgery.”

It was June 2023. Beijing’s summer was sweltering, but Heishi’s heart felt like it was soaking in warm water, finally rippling with a trace of hope.

During the preoperative waiting period, Heishi took her father to climb the Great Wall, hoping to walk with him and see more of the world’s scenery before the surgery.

[Before surgery, my father and I happily made a “peace” sign at the Great Wall]

On June 25, 2023, my father underwent a complex cytoreductive surgery at Beijing Aerospace Center Hospital. The procedure included cystoscopy + bilateral ureteral stent placement + laparoscopic exploration + conversion to open surgery + right hemicolectomy + greater and lesser omentectomy + round ligament resection + bilateral peritoneal/pelvic peritoneal/bilateral diaphragmatic peritoneal resection + intraoperative hyperthermic intraperitoneal chemotherapy (HIPEC) + drainage tube placement. The cytoreduction score was CCR3, and 6000ml of ascites was drained during surgery.

Postoperative pathology indicated high-grade pseudomyxoma peritonei, likely originating from the appendix, with mucinous adenocarcinoma invasion and mucin lake formation. Margins of the ileum and colon were clear, and no lymph node metastasis was found (0/11). Immunohistochemistry showed CK7 (+), CK20 (+), villin (+), CDX2 (+), MUC-2 (+), MUC-1 (+), P53 (-), Ki-67 (70%), TopⅡa (2%), and all MMR proteins (+).

[Just out of the ICU, unable to speak, he gave an OK sign to show me he was fine. Sadly, I was too slow to capture it.]

“On the day of the surgery, my dad went into the operating room at 8 AM, leaving all the signing and decision-making entirely to me. During the pre-op discussion, the doctor said whether to remove the right colon would depend on intraoperative exploration. For those two hours, I stood outside the OR, frantically seeking help in patient groups, feeling like my father’s life was literally in my hands. I couldn’t afford a single mistake.”

After a long ten-hour wait, thankfully, the surgery went smoother than expected. Postoperatively, my father completed 5 sessions of HIPEC.

However, the postoperative recovery path remained full of challenges: it took my father seven days to pass gas, and a sudden case of massive postoperative bleeding in the next bed left Heishi terrified.

「 IV. Disease Relapse, Repeated Setbacks in Clinical Trials 」

Yet, life’s tests never truly stopped. Two months post-surgery, a bowl of uncut abalone soup triggered a sudden bowel obstruction. He was rushed to the emergency room again for gastrointestinal decompression and fasting.

During that time, Heishi stayed by his bedside day and night, truly understanding that on the cancer journey, there is never a smooth sail, only careful, step-by-step progress.

[First post-op obstruction, rushing to the ER in the middle of the night. Even now, looking back, it still makes my heart race.]

In November 2023, five months post-surgery, my father’s abdominal circumference increased, and ascites returned.

Although doctors said at each follow-up that we only needed to observe, a tight string of anxiety always remained in Heishi’s mind. She desperately searched for clinical trial opportunities for her father but faced repeated rejections.

Eleven months post-surgery, perseverance paid off. Heishi finally found a clinical trial targeting ascites. All procedures and screenings progressed smoothly.

But just one hour before medication, the doctor informed us: after repeated discussions by several radiology directors, no tumor >1cm could be found in my father’s body for monitoring. He did not meet the inclusion criteria. Enrollment failed.

Just like that, 4700ml of ascites was painfully drained, yet no treatment was administered.

“That was the closest we ever got to enrolling. My heart sank to the bottom again. They say ascites shouldn’t be drained casually, as it tends to return faster. During that time, I lived in constant fear, terrified that my dad’s condition would take another turn.”

Amidst this worry and continuous follow-ups, time moved to April 2025. My father began vomiting occasionally in the late hours, mostly undigested food. A small bowel series at Zhangzhou Hospital showed a filling defect in the gastric wall.

In May 2025, a follow-up at Xiamen University Affiliated Hospital showed reduced ascites and less omental thickening, but noticeable thickening of parts of the small intestine, colon, and gastric wall compared to before.

In July 2025, after a week of persistent abdominal pain, my father received symptomatic treatment at the Xiamen University ER. CT showed clustered small bowel loops in the right lower abdomen, suspected cholecystitis, and slight dilation of the right inguinal region. Colonoscopy revealed erosion at the ileocolic anastomosis, and gastroscopy showed a protrusion in the descending duodenum. Pathology from the colonoscopy finally confirmed: moderately to poorly differentiated adenocarcinoma at the anastomosis with signet ring cells.

In August 2025, Heishi and her father returned to Beijing Aerospace Center Hospital for a follow-up. Enhanced CT showed clustered and locally dilated small bowel loops with edema and a “cocoon sign.” Gastrointestinal contrast showed a fixed stomach shape and poor filling of the duodenal bulb.

However, after joint evaluation by experts from Beijing Aerospace Center Hospital, Tsinghua Changgung Hospital, and Beijing Shijitan Hospital, all agreed that my father had no surgical indications and surgery was temporarily unnecessary. Only myrtol was added for symptomatic relief.

From September to the National Day holiday in 2025, my father’s vomiting frequency increased to 2-4 times per week, and his condition further deteriorated.

「 V. Surgical Failure, Yet Never Giving Up 」

In early October 2025, my father had a follow-up at Beijing Aerospace Center Hospital. Enhanced CT and GI contrast showed no significant changes. Colonoscopy revealed a fixed, narrowed intestinal lumen 28cm from the anus with extrinsic compression, confirming bowel obstruction.

Heishi visited multiple hospitals in Beijing for consultations, but doctors’ opinions diverged: Beijing Aerospace Center Hospital still deemed surgery unnecessary and recommended a triple-lumen gastric tube; Beijing Shijitan Hospital advised immediate cytoreductive surgery; another expert suggested an obstruction catheter.

Half a month later, my father’s vomiting worsened drastically, progressing from vomiting undigested food at night to vomiting after every meal.

On October 27, 2025, a CT at Beijing Chaoyang Hospital indicated: postoperative changes of appendiceal mucinous adenocarcinoma, dilation and fluid accumulation in the stomach, duodenum, and parts of the jejunum (bowel obstruction), disappearance of mesenteric structures, thickened omentum and peritoneum, encapsulated fluid, and dilation of the right renal pelvis and upper ureter. Based on these results, Dr. Xu at Beijing Aerospace Center Hospital determined that my father now met the surgical indications.

A subsequent GI contrast further confirmed gastrointestinal dilation and contrast retention.

On October 31, an obstruction catheter was urgently placed, temporarily relieving the bowel obstruction symptoms.

Considering the extreme difficulty of a gastrointestinal anastomosis, the day before surgery, Heishi made a heavy-hearted decision to discharge her father and transfer him to Peking University People’s Hospital for treatment.

On November 18, 2025, inside the operating room at Peking University People’s Hospital, an hour into the surgery, the lead surgeon called Heishi over. She, her mother, and aunt walked up full of hope, expecting a smooth exploration and a detailed surgical plan. Instead, they heard only one sentence: “We can’t resect it. The intestines are inseparable, fused too tightly. If we continue, the patient might not survive the surgery.”

The abdomen was closed. The surgery failed.

“The major surgery, expected to take hours, ended in four. My dad lay groggily on the bed and asked how it went, what was removed. I didn’t know how to answer. He glanced at the clock, perhaps guessing the outcome, said nothing, closed his eyes, and fell back into a deep sleep.”

This was the most despairing moment in five years of fighting cancer. Multiple doctors in Beijing advised Heishi to take her father to a local hospice ward, but she refused to give up, and couldn’t.

[The blow of the failed surgery was immense; it took a long time to recover from it.]

“During the postoperative recovery period, I consulted surgical experts across Beijing, but no one had answers.”

“Refusing to give up, I took my father to Shanghai GoBroad. Professor Li suggested trying mesenteric artery infusion therapy.”

“Considering my dad’s postoperative weakness, immediate chemotherapy wasn’t suitable. Once his strength slightly recovered, we traveled south to Wenzhou to find Professor Shi, attempting to provide nutrition via nasogastric tube—I knew IV nutrition alone wasn’t enough. Unfortunately, that path was also blocked: the obstruction catheter hadn’t passed the blockage, making nasogastric feeding pointless.”

“With no meaningful treatment available in Wenzhou, we moved again to Zhejiang Cancer Hospital to see Dr. Wen for obstruction catheter adjustment. Five attempts, five failures. Out of desperation, we proceeded with mesenteric artery infusion therapy, but the results were still unsatisfactory, showing no therapeutic benefit.”

“At the airport, my dad joked with me, ‘People usually travel north for treatment, but we’re heading south.’ I said, ‘It doesn’t matter. North or south, we’ll go wherever the doctors are. There will always be a way. I’ve always believed that.’”

Today, my father cannot eat normally and relies entirely on IV nutrition. Heishi, once a girl afraid of needles, has become a “family nurse” skilled in subcutaneous injections, medication preparation, flushing lines, and PICC line care.

[Heishi’s daily routine of administering IV fluids to her father at home.]

“After discharge, no hospital would admit my father for pure nutritional support. I had to force myself to learn nursing. Video tutorials from nurse friends, shared experiences from patient groups, and late-night study of nursing manuals became my ‘teachers,’ enabling me to provide daily nutritional support and symptomatic care at home.”

“Only now do I truly understand what Director Zhou Aiping told me: ‘Not treating is also a form of treatment.’”

「 VI. Bipolar Disorder: A Family of Three Supporting Each Other 」

For a long time, Heishi thought she was just irritable and stressed. One moment, she’d be hyperactive, her mind racing, feeling invincible, working late with endless energy. The next, she’d plummet into an emotional abyss, feeling numb and heavy, finding even getting out of bed or speaking exhausting. Her emotions were like a rollercoaster without a safety belt—uncontrollable for her, incomprehensible to others.

2023 was the hardest year for Heishi’s family. In the first half, she shuttled between Beijing and Fujian with her father for surgeries and follow-ups. In the second half, as his condition stabilized, Heishi’s bipolar disorder relapsed severely due to academic pressure, relationship setbacks, and prolonged anxiety, to the point where doctors demanded immediate hospitalization.

Once, Heishi accompanied her father through his illness; now, it was his turn to guide her out of the emotional darkness. Still recovering from surgery, he would wake up at midnight to check if she was asleep, fearing she might do something drastic. Her mother cared for her father around the clock while patiently soothing Heishi’s emotions. The family of three supported each other, surviving the darkest days.

[My father accompanied me through my bipolar journey. The happiest times, visiting many cities.]

True recovery is never about being “cured,” but learning to “coexist” with the illness.

Bipolar disorder has no overnight cure. Heishi’s improvement was forged through perseverance: no longer resisting medication, taking it on time and in the correct dosage, and stopping the habit of arbitrarily stopping or reducing it based on feelings; learning to recognize emotional warning signs—sleeping very little, talking excessively, and impulsivity are precursors to mania; persistent low mood, social withdrawal, and self-doubt are signs of depression;

no longer forcing herself to be a perfect daughter or a perfect person, learning to allow herself to be tired, to be vulnerable, and to ask others for help.

Heishi began to face her father’s illness calmly and her own condition openly. She stopped using extreme emotions to mask her inner fears and ceased punishing herself with endless guilt.

[One of the few family photos. Mom worked so hard this year.]

This treatment journey ultimately taught Heishi two things: first, love isn’t about enduring in silence; honesty is. Second, being sick is not shameful; refusing to face it is. Her parents endured silently before the operating room for her sake, and she persisted for herself in the depths of emotional despair. Two generations, each learning to live well in their own way.

「 VII. Becoming a Faint Light, Illuminating Fellow Patients with Perseverance 」

Over five years of fighting cancer, Heishi has taken wrong turns, faced misdiagnoses, endured the agony of surgery and the despair of relapse, but also felt the warmth of fellow patients, the dedication of doctors, and the unwavering support of family.

The financial support from uncles, her mother’s tireless day-and-night care, her father’s unextinguished will to live, and the encouragement and shared experiences from strangers in patient groups have all been the strength that kept Heishi pushing forward.

“What moves me most is that I’ve never met anyone from the group offline, but because of my sharing, doctors or patients often recognize me during hospital visits. It makes me feel that I, too, am shining and lighting the way for others.”

Heishi began sharing her journey on Xiaohongshu and in patient groups, creating support groups for bowel obstruction patients, and sharing the pitfalls she fell into and the knowledge she gained with more people.

Because Heishi deeply knows that for rare disease patients, a single piece of useful information or a sliver of hope can be the light that keeps them going.

“People ask me, are you tired? How could I not be? From college to graduation and work, academics, life, and my father’s treatment—three mountains pressing down on me. As I write this, it’s my dad’s fourth and a half month of fasting. He’s lost a lot of weight from not eating, but thankfully, he still has the strength to playfully hit me, cook, and even fix pipes.”

On the cancer journey, the most precious thing is never a perfect treatment plan, but the stubborn refusal to give up. Doctors have repeatedly said “there’s no hope,” but Heishi always remembers Director Han’s words: “It’s not that we persist because there’s hope; it’s that by persisting, we create hope.”

Over ten hours of IV fluids daily, three injections of octreotide, and various medications for different types of abdominal pain on the table—Heishi stays by her father’s side every day, never leaving.

“Dad, I won’t give up, and you don’t give up either. Okay?”

Postscript (by A Ming from the Panda Peritoneal Group):

Reading Heishi’s family story, it took me a long time to recover. It’s not an experience you can just “understand and move on from,” but one that makes you repeatedly reflect, empathize, and feel a heavy ache. A father with peritoneal metastasis and bowel obstruction, a daughter who herself battles bipolar disorder, guarding each other when fate is at its sharpest and most unforgiving.

Her father was a former soldier. I can’t help but imagine him in his youth—standing straight, speaking decisively, with determined eyes. That kind of man spends a lifetime taking responsibility, shielding others, rarely showing weakness or crying out in pain. But then came cancer, peritoneal metastasis, and repeated obstructions. His body slowly surrendered, his former strength faded, and even his basic dignity was stripped away by the disease.

Standing beside him is Heishi. Someone who already struggles with her own emotional turbulence, yet is pushed to the forefront to face the most concrete, heavy, and undignified aspects of caregiving. It’s not just companionship. It’s nasogastric feeding, vomiting, the constant risk of infection, and the cautious care required for every feeding. It’s her repeatedly checking the tubes, slowly administering nutrition, staying awake at night to listen for changes in his breathing, and instantly masking her own emotions the moment he frowns, softly asking, “Is it hurting again?”

These tasks should be handled by a team of doctors and nurses. Yet, she learned them alone, at home, step by step.

I often picture this in my mind: during the day, she might have just been dragged into the depths of her own emotions, perhaps having broken down in a corner. But then she turns around, washes her hands, prepares the equipment, adjusts her posture, and becomes calm and restrained, like a seasoned caregiver.

She cannot fall apart. If she does, her father will have no one to rely on. But how could she not? She isn’t made of steel. She is Heishi, a person torn between highs and lows, someone who also deserves to be cared for and caught.

Yet fate gave her no such chance. It simply pushed everything before her and said: You do it. As someone who has also cared for a patient, I know that feeling too well—you know you’re about to break, but you still squeeze out every last ounce of strength because that person is watching you, waiting for you.

And Heishi’s burden is even heavier. She not only faces her father slowly being taken by illness but also fights the silent storm within herself. She might be fighting back tears one second, and the next, steadying her hands to connect the feeding tube. Her heart might be shattered, yet she still forces her voice to sound gentle: “Take it slow, no rush.”

In that moment, she isn’t a patient. She is the only pillar. And that is precisely why it leaves one speechless with sorrow. A soldier’s daughter has taken up the “never fall” burden her father carried his whole life.

Only this time, there are no comrades, no slogans, no one to share the load.

Just a quiet room, a bed, and one person guarding another through a long, slow process. She probably tucks the blanket around her father gently on certain nights, then turns to lean against the wall, crying softly for a while. After crying, she continues.

As I write this, one sentence keeps echoing in my mind: Some people aren’t unbroken. They are just broken, yet still choose to get up and hold others up.

Heishi is exactly that kind of person.

She uses her own trembling world to steady another life that is falling.

If possible, I truly hope that one day, she won’t have to be so desperately strong. I hope someone can take those tubes, those medications, those responsibilities she dares not let go of, so she can cry freely like anyone else, and be held, hearing: “It’s okay now. You don’t have to hold on anymore.”

But until then, she keeps gritting her teeth and moving forward. And those of us who read her story can only, from afar, with tearful eyes, say: Heishi, you’ve already done so much, so much it breaks our hearts.

Names in this article are pseudonyms to protect patient privacy.

Images featuring the patient have been authorized by the patient. Unauthorized use is prohibited.