I’m a teacher, a wife, a scuba instructor, a mermaid, and now—an advocate and survivor. Through misdiagnoses, misinformation, and moments of deep fear, I found strength in community, clarity through research, and healing in the hands of specialists who understood this rare disease.
This biography is more than a medical timeline. It’s a reflection of resilience, a tribute to the people who lifted me up, and a guide for others navigating the unknown. If you’ve just heard the words “appendix cancer,” I hope my journey helps you feel less alone—and more empowered to ask questions, seek second opinions, and believe in your own strength.
How It Started
I was exhausted—and at first, I blamed it on the chaos of our water heater flooding the house and my husband, Chris, being hospitalized. On top of that, I was dealing with persistent heartburn, a nagging cough, and a urinary tract infection (UTI). After 33 years of teaching elementary school, I decided to use some of my sick days for emergency leave to support Chris and see my doctor.
Antibiotics were prescribed, but they made me nauseous and didn’t always stay down. Between home repairs, hospital visits, and hotel living, I brushed it off. Unsurprisingly, the UTI returned a couple of weeks later.
During my second visit, my doctor ordered a CT scan, which revealed a cyst on my right ovary. Next came a bladder scope and a referral to a surgical gynecologist. A hysterectomy was scheduled for late May 2023. Around that time, I made the decision to retire from teaching.
Discovery & Recovery
During the hysterectomy, my gynecologist removed my appendix, noting it looked abnormal. Recovery went smoothly, and five weeks later, Chris and I were off to Roatán, Honduras. I spent the week relaxing in a hammock while Chris led dives with our tour group.
Biopsy Results
At my July follow-up, the biopsy confirmed my appendix cancer diagnosis: Low-Grade Appendiceal Mucinous Neoplasm (LAMN), classified as pT4a under the AJCC 9th Edition. Genetic testing came back negative for EGFR, BRAF, KRAS, and NRAS mutations.
What pT4a Means
This classification indicates that the tumor had spread through the visceral peritoneum or invaded the serosal surface or mesoappendix. It’s considered Stage 4, meaning local spread—but not pT4b, which involves direct invasion of other organs.
Oncology Visit
My gynecologist referred me to a local oncologist.
The oncologist walked in and asked, “Why are you here?”
“I was told I have cancer,” I replied.
“What kind?”
“Appendix.”
He reviewed my chart and said bluntly, “You’ll be on chemo for life. You have Stage 4 cancer. If you don’t do chemo, you’ll die.”
I told him, “I’m not sure I want to do chemo.”
Meltdown
I left the office, sat in the car, and cried. I felt selfish for hesitating about chemo. I turned to the internet, but Google searches didn’t offer much hope. After many conversations, I agreed to a second appointment and began navigating the stress of retirement insurance coverage.
Chemotherapy
A chemo port was placed, and I began FOLFOX. The routine was relentless: bloodwork, CT scans, doctor visits, chemo infusions, and going home with a chemo pump. Then a week off—and repeat.
There was no change in tumor size, but side effects escalated: hair loss, nausea, vomiting, mouth blisters, cold sensitivity, neuropathy in my feet, and debilitating fatigue. Promises to adjust the chemo load were made, but my medical records didn’t reflect any changes.
Finding Support
I discovered the PMP Appendix Cancer Support Facebook group. The kindness, advice, and encouragement were life-changing. One message stood out: “FIND AN APPENDIX CANCER SPECIALIST.” That’s when I learned about CRS (Cytoreductive Surgery) and HIPEC (Hyperthermic Intraperitoneal Chemotherapy).
Oncologist Fumble
After five rounds of chemo, I was severely anemic and emotionally drained. I decided to stop chemo. Chris and I asked about CRS/HIPEC. The oncologist acted surprized we were interested in surgery but scheduled a consult.
Then came a cancellation notice. The surgeon wasn’t qualified for the procedure I needed.
MD Anderson Cancer Center
I called MD Anderson to confirm they accepted my insurance. Within three days, I had an appointment for a second opinion and transferred my medical records. After bloodwork and a CT scan, I met Dr. Beth Helmink. She advised me to stop chemo immediately—it wasn’t recommended for LAMN and was worsening my anemia, which could delay surgery.
I messaged my former oncologist with MDA’s recommendation. They canceled my appointments within the hour with no comments.
Watch & Wait
Dr. Helmink’s team recommended quarterly bloodwork and CT scans to monitor my cancer and allow my body to recover from the chemo damage. I had my chemo port removed.
CRS/HIPEC Surgery
After a year of monitoring, my cancer remained stable. But I was tired of letting it dictate my life. I chose to take control and scheduled CRS/HIPEC for September 2024.
The surgery lasted 10 hours. My spleen was removed. My diaphragm and liver were scraped. I no longer have a belly button. I spent 8 days in the hospital. My scans are now every six months—and I’m officially NED (No Evidence of Disease).
Recovery & Survivorship
It took about a year to feel like myself again. The fatigue gradually eased. Neuropathy is improving. Around the three-month mark, my hair shed significantly.
Because I no longer have a spleen, I need extra immunizations and must go to the ER if my temperature exceeds 100°F. I also avoid high-risk foods like raw oysters, ceviche, lunch meat, blue-veined cheeses, and dressings with raw egg.
APPENDICURE
I met Amanda, founder of APPENDICURE, when she asked for help building a website. I wanted to give back to the appendix cancer community that had lifted me up. Together, we have thoughtfully crafted www.appendicure.com to help patients and caregivers navigate their journey with clarity and compassion.
Much love and peace to you all.
—Amy & Chris
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