3 Surgeries, 25 Radiotherapy Sessions, 58 Chemotherapy Cycles: A Late-Stage Colorectal Cancer Patient's Journey with BRAF Mutation | Patient Story

Author | Qing (BRAF Group)
Editors | Guangguang, Xianning

「 Part I: Mom's Colorectal Cancer Diagnosis 」

In late June 2022, my mom mentioned she had been experiencing abdominal pain for a week or two without relief. With my younger brother's birthday approaching, our family decided to take her to a hospital in Haikou for a check-up and celebrate his birthday together.

That Wednesday evening, we sat around the table, happily eating, chatting, cutting the cake, and taking a family photo. If happiness had a concrete form, it would undoubtedly be that unforgettable and joyful night.

The next day, my brother and dad took Mom to the hospital for a series of tests. When I asked about the results, my dad simply said there was "a little something" in her intestines and she needed to be hospitalized for a few days. At the time, I was busy with overtime work and had never faced a major crisis, so I had no idea what "a little something" actually meant.

On Sunday afternoon, while I was working at the office, my brother suddenly called and said, "Sis, come over." To this day, I can't remember exactly what he said. My mind just went blank, followed by uncontrollable tears and frantic searches: Mom was diagnosed with colorectal cancer.

[ Mom before she fell ill ]

The hospital quickly scheduled surgery for her: the first case on Monday. Postoperative pathology indicated stage pT4aN2aM0, moderately to poorly differentiated colon adenocarcinoma, invading the full thickness of the bowel wall, lymph nodes (9/13); PMS2(-). Fearing that future recurrence might make biopsy difficult, the doctors recommended genetic testing. The results indicated a BRAF mutation, and postoperative chemotherapy with the XELOX regimen was advised. The surgery went smoothly. For the following six months, during the pandemic, we accompanied Mom through difficult trips between the hospital and home until her chemotherapy ended. It was only later that I learned my brother had fainted in the doctor's office from overwhelming grief on the day Mom was diagnosed.

「 Part II: Recurrence with Adrenal Metastasis 」

In mid-April 2023, in the middle of the night, Mom was tossing and turning in severe flank pain. We immediately took her to the hospital for imaging. A PET-CT scan showed: "Postoperative colon Ca patient, a new radioactive abnormal concentration mass in the right adrenal region compared to previous (2022-12-14), considered adrenal metastasis with rupture and hemorrhage." Mom had relapsed.

After a multidisciplinary team (MDT) discussion, the internal medicine and surgery departments could not reach a consensus. The surgical team suggested that the adrenal tumor might be primary, recommending a biopsy first before deciding on further treatment. Ultimately, the doctors respected the family's and patient's wishes, leaving the decision to us.

My brother and I sat in the doctor's office from afternoon until evening, unable to decide whether Mom should undergo surgery. The procedure carried significant risks, such as adrenal rupture and hemorrhage, and the large tumor was close to the aorta with retroperitoneal lymph nodes involved. We fell into despair, feeling that any choice carried unpredictable risks. But she is our mother, and we couldn't bear any potential harm coming to her.

At the time, lacking the awareness to seek independent medical opinions, we first relied on personal connections. Friends and colleagues quickly helped us consult several doctors. After Mom's surgery in 2022, she had undergone genetic testing, but we didn't understand the report, and the doctors at the time said it wasn't necessary to review it since early-stage results wouldn't change the treatment plan.

When one doctor mentioned that direct surgery was not recommended for BRAF mutations and suggested a chemotherapy regimen instead, we didn't yet realize this would be a crucial turning point. After much hesitation, we finally signed the surgical consent form. The surgery went relatively well. Postoperative pathology showed: metastatic moderately to poorly differentiated adenocarcinoma in the adrenal gland with mucin secretion, consistent with colorectal adenocarcinoma metastasis, PMS2(-); immunohistochemistry of primary and adrenal sites: both PMS2(-); MLH1(+/-).

But I never expected that shortly after this surgery, Mom experienced a second relapse with multiple metastases: peritoneal, abdominal, cervical lymph node metastases, and suspected adrenal metastasis.

「 Part III: Joining the Panda Group 」

Actually, after Mom's first colorectal cancer surgery, while endlessly browsing online forums, I knew about the "Panda Group." However, most online posts from patients in similar situations were either filled with anxiety or naive hopes of a cure after surgery and chemotherapy. To avoid these negative emotions, I was too afraid to join any patient groups. But after Mom's second relapse and surgery, I realized I needed to actively seek out more scientific and rigorous treatment experiences.

My younger sister found on Xiaohongshu that the Panda Group is a highly influential patient support community and suggested I join. After submitting Mom's medical records, I was quickly added to the Panda Lynch Syndrome Group, which suited her condition. The group announcements and links were filled with treatment information. In those days, while immersed in sorrow, I spent hours reading through the group's treatment summaries.

「 Part IV: Consultation with Professor Ding 」

When I shared Mom's immunohistochemistry results from both surgeries (colon PMS2(-); adrenal metastasis PMS2(-); MLH1(+/-)) in the group, fellow patients immediately advised me to get a comprehensive genetic test using PCR to determine microsatellite status. They also recommended I visit Professor Ding at Sun Yat-sen University Cancer Center (SYSUCC) in Guangzhou, and kindly taught me how to download the SYSUCC app and book an appointment.

With persistence, I successfully booked an appointment with Professor Ding. I remember the consultation was on a Friday, before the genetic report was out. After carefully reviewing Mom's medical history, Professor Ding provided two different treatment options. My brother and I returned home that day. The genetic report came out on Sunday evening: MSS; TMB: 5; BRAF mutation. I immediately rewatched Director Han's video explaining BRAF mutations and recalled those confusing letters on Mom's initial genetic report. That video made me truly grasp the severity of her condition.

The difference between using immunotherapy and targeted therapy was stark, shifting from the Lynch group to the BRAF mutation group. Carrying a heavy heart and a sense of loss, I flew to Professor Ding's clinic early the next morning. Although I hadn't booked an appointment in time, fortunately, Dr. Cheng helped us get an added slot. Professor Ding arranged a hospital bed and scheduled the necessary tests for us.

Under Professor Ding's guidance, on May 30, 2023, Mom underwent a left supraclavicular lymph node biopsy at SYSUCC. Pathological diagnosis: (Left supraclavicular lymph node biopsy) Microscopically: morphology consistent with moderately differentiated adenocarcinoma with mucin secretion. Combined with history and immunohistochemistry, consistent with colorectal adenocarcinoma metastasis. Immunohistochemistry: CK20(+), CDX2(+), SATB2(+), BRAF(+), MSH2(+), MSH6(+), MLH1(+), PMS2(+).

At that moment, I was on the verge of emotional collapse, overwhelmed by the thought that "BRAF mutation carries a poor prognosis." However, Professor Ding patiently explained the treatment strategy and comforted us not to worry too much. Under his guidance, Mom promptly began her new treatment.

[ Mom and my brother boarding the flight home on the day of discharge after the first chemotherapy cycle ]

If we chose to treat her in Guangzhou, we would have to travel between Hainan and Guangzhou every two weeks, not to mention the frequent summer typhoons. Considering Mom's physical condition after chemotherapy, in late August, we decided to administer the FOLFIRI + encorafenib + cetuximab regimen locally, and then return to SYSUCC for follow-up reviews.

「 Part V: The Third Surgery 」

During the late September follow-up, Professor Ding said surgery was an option and suggested continuing the current regimen to see how it went. The panic from the rapid multiple metastases after the previous surgery hadn't fully faded, so suddenly being told that conversion therapy was successful and surgery was possible brought both joy and fear. But my brother comforted me, saying that having a surgical opportunity was ultimately a good thing.

On November 23, 2023, Mom underwent a second left supraclavicular lymph node biopsy at SYSUCC. Pathological diagnosis: The biopsy specimen showed fibrous tissue with mucin lake formation, with no definite tumor cells observed.

Throughout this period, Mom was unaware of her true condition. We explained all her treatments as being for "low immunity." However, during the November outpatient follow-up, when she heard the doctor mention radiotherapy, she immediately seemed to understand everything and became extremely emotional. I knew we could no longer hide the truth.

[ Mom fell asleep waiting for her flight at the airport after completing the radiotherapy mold, on her way back to Hainan ]

Now I reflect on whether it was right for family members to hide the true diagnosis from the patient. Perhaps keeping them in the dark only increases their fear. I now believe we should learn to respect the patient's wishes, as they have the right to know their own condition. We shouldn't unilaterally use family love as an excuse to force them into treatment.

On April 18, 2024, Mom finally had the opportunity for surgery. She underwent omentum patch + abdominal adhesion lysis + left adrenalectomy. Postoperative pathology showed no cancer in the omental tissue; moderately differentiated adenocarcinoma infiltration was found in the adrenal tissue, with mucin lake formation. Combined with immunohistochemistry and history, it was consistent with colorectal adenocarcinoma metastasis. Postoperative treatment continued with FOLFIRI + encorafenib + cetuximab chemotherapy.

[ Mom getting off the plane one month after surgery, returning to SYSUCC for a follow-up visit ]

「 Part VI: Looking Back on the Journey 」

Admittedly, we cannot judge past treatment decisions from a hindsight perspective. If we had to do it all over again, with the same mindset and experience at the time, we would likely make the same choices. This is the path we walked, and there's no need to overly romanticize the road not taken.

[ After three surgeries, Mom's adrenal gland was removed, requiring hormone replacement therapy. On the road between SYSUCC and the First Affiliated Hospital ]

I hope future patients will try to consult professional doctors in major cities. Secondhand medical advice is often too superficial, conflicting, and inconsistent. With our limited knowledge, we cannot fully grasp these professional recommendations. Direct consultations with doctors can greatly help in comprehensively understanding one's own condition.

Do not let your entire life be consumed by cancer treatment. The ultimate goal of treatment is to return to daily life. Teacher Miaomitou once said that one sign of maturity is learning to accept the gray areas of the world. I truly wish I could go back to being a carefree child, but the past cannot be changed. Cherishing and accepting the present is what truly matters.

Finally, I want to thank the administrators of the Panda BRAF Group, especially Teacher Miaomitou, for tirelessly answering questions every day: you are both an emotional outlet and a life mentor. Thank you to Xiaojie, Dr. Xiaohu, and Jiajia for helping me queue, and to the fellow patients who lent or donated medications.

Like holding a rat but fearing to break the vase, we were initially terrified that the regimen wouldn't control the cancer or that Mom couldn't withstand it. After slowly accepting the median survival statistics, we saw hope and naturally grew greedy for more time.

Thank you to Professor Ding at SYSUCC for his encouragement in our darkest moments, his balanced advice during surgical decisions, his reassurance, and his precise control over our treatment plan and choices.

Over three years, 3 surgeries, 25 radiotherapy sessions, 58 chemotherapy cycles combined with targeted therapy, and two ambulance emergencies due to fainting. Thank you, Mom, for your strength. The first time I expressed my love to you was too indirect: I just forwarded you Beyond's song "Really Love You." Now, I want to say it loudly again: "I love you!"

Looking back on these years of fighting cancer feels surreal, filled with mixed emotions. Along the way, I have received so much help and warmth. I've always wanted to express my gratitude, but as a STEM-trained woman, I struggle to find the right words. Now, I gather my courage to use this platform and this article to sincerely thank all the friends I've met online or in person.

The journey continues, and honestly, I'm not entirely at peace yet, but with such wonderful doctors and so many caring fellow patients, at least we walk side by side, never lost or alone.

As Director Han rightly said: "We don't persist because there is hope; we persist, and that is how hope is born. Let's keep going together!"

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

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