APPENDICURE

I am a licensed speech-language pathologist, mother, “Nana”, Reiki master/teacher, and a lifelong advocate for the “voiceless” and forgotten. For decades, my professional and personal life has centered on communication, empowerment, and helping others find language when words are difficult to access.

My work has always been grounded in listening — deeply, carefully, and without assumption. Whether supporting clients, families, or students, I have believed that every person deserves to be understood and respected.

Advocacy has never been abstract to me. It has been lived — in classrooms, clinical settings, and community spaces. Long before cancer entered my life, I was committed to standing beside those navigating complex systems and uncertain terrain.

My Cancer Journey

It all started quietly. I was completely asymptomatic, no pain, no discomfort, yet there was an unexplained weight gain of 25 pounds, all in the abdomen. When I questioned doctors they said it was slow metabolism or post menopausal weight gain. I insisted that it felt hard rather than soft and was told it must be an increase in muscle mass. This wasn’t due to overeating; I was eating less and healthier, walking 4 miles daily at a brisk pace, and working with a personal trainer two hours each week.

By April 17, 2025, my abdomen had become so distended that I looked nine months pregnant. I couldn’t put on my shoes. I headed to my PC doctor who sent me straight to the emergency room.

At the ER, they ran bloodwork and CT scans of my abdomen, pelvis, and chest. The results suggested advanced-stage ovarian cancer. The tumor was compared in size to a football. I never saw a doctor in the ER. Instead, I was sent home with instructions to find a gynecologist on my own. I called my husband who was at the vet with our sick fur baby. Silence was all I heard at the other end. 

The next morning, I got a call from my primary care physician. Seeing the severity of the findings, including compression of my lungs and colon and an enlarged heart, he was enraged that I had been sent home. He insisted that I be admitted immediately to Nyack Hospital for monitoring and evaluation by an oncologist that he called himself. I  stayed in the hospital for a week, during which the appropriate specialists, a gynecologist and an oncologist, became involved in my care.

A needle biopsy of the tumor was scheduled.The gynecologist and oncologist strongly advised against it, warning it could seed additional tumors. Montefiore Einstein Hospital, where a transfer had been planned, refused to accept me without the biopsy.

What followed was a battle: my doctors had to fight against their employer’s recommendation, and I had to fight alongside them to avoid a procedure that could put me at risk. Ultimately, they shared my case with a gynecological oncologist at Westchester Medical Center, where I could be evaluated safely. Adding to the stress, I was discharged a day before that appointment, leaving me responsible for navigating the next steps on my own. 

I met with the gynecological oncologist at Westchester Medical Center, Dr. Novetsky, hoping surgery could be performed by the end of the week. It was far more complicated than expected. Dr. Novetsky, insisted that a colorectal surgeon, Dr. Clark, be part of the team, adding another layer to coordinate. It was a wise decision! 

As a result, the planned surgery, which included a total hysterectomy (TAH) and bilateral salpingo-oophorectomy (BSO), was delayed. A colonoscopy was added to the procedure, meaning the surgery could not be scheduled for another 12 days. I also was told my cervix would be removed following a Pap smear. As I waited, I found myself unable to eat or drink much; I became full very quickly, and my abdomen continued to expand in girth. My primary care physician monitored me closely, having me come in daily while awaiting surgery to ensure I was stable.

Surgery and New Diagnosis

My surgery took place on May 2, 2025. The night before, I completed the colonoscopy preparation, which kept me awake all night. I wasn’t crying. I wasn’t outwardly afraid. I was numb — as if the entire experience were happening to someone else.

On the morning of surgery, I arrived at 5:30 AM. I left my house at 4:45 AM with my husband and son, still feeling the effects of the colonoscopy prep. After signing numerous papers that I didn’t comprehend, I was taken from my husband and son with no idea  what the surgeons might find. An 8-inch vertical incision was made from above my navel to my pubis. Even the surgical team did not know what awaited them once they entered my abdomen. My gynecologic oncologist had seen only one case of appendiceal cancer before. It was a first for the colorectal surgeon.

The operation lasted more than eight hours. During surgery, multiple peritoneal implants were discovered, revealing that the disease had spread within the abdominal cavity after the appendix burst. 

In the recovery room, I did not wake easily. I remember hearing several voices urging me to wake up. Apparently, the lead surgeon came to give me preliminary results, but I had no recollection of that conversation the next morning. That first explanation of my diagnosis was delivered — and lost — somewhere in the fog between anesthesia and shock.

The initial suspicion of advanced ovarian cancer shifted. The disease originated in the appendix: primary appendiceal cancer, a malignancy affecting roughly one in a million people each year.

During the colonoscopy performed in conjunction with surgery, a sigmoid polyp was also found, identified as a tubulovillous adenoma.

Hyperthermic intraperitoneal chemotherapy (HIPEC) was not performed during the surgery. I was told it might be performed at another facility. Even after an eight-hour operation and the removal of several major organs, there remained uncertainty about what would come next. My appendix wasn’t on the list of organs to be removed prior to the commencement of the surgery. 

Finding an Appendiceal Cancer Specialist

After surgery, I faced a new challenge: my disease was extraordinarily rare, and expertise was limited. Primary appendiceal cancer affects roughly one in a million people each year, and many oncologists, even experienced ones, have little to no exposure to it.

While still in Westchester Medical Center, I began searching for a specialist who could truly understand the complexity of my case. This meant researching hospitals, reading medical literature, studies and advocating for myself at every step. My gynecologic oncologist and colorectal surgeon supported me, but the rarity of my diagnosis meant standard protocols were unclear, and treatment decisions required a team with specific experience in appendiceal malignancies. Dr. Novetsky assured me that he removed all macroscopic signs of disease but that was no guarantee of overall survival rate or chance of recurrence. 

Before my discharge on May 7, Dr.Novetsky  referred me to Memorial Sloan Kettering Cancer Center and specifically to Dr. Georgios Karagkounis, a specialist renowned for managing rare appendiceal cancers. My first appointment at MSK was on June 12, 2025. A new pathology report was ordered, and a tumor board meeting had been expected, but it wasn’t needed because MSK agreed with the existing findings. Dr. Karagkounis did his best to reassure me that I was in the right place for this rare cancer. 

I felt relieved that neither HIPEC nor chemotherapy would be used to treat this cancer, but I also understood that additional surgeries could  be necessary depending on how the disease behaved. Finding the right expert transformed the way I approached my recovery and ongoing care. For the first time since the initial ER visit, there was clarity, a plan, and confidence that my disease would be managed by someone who had seen cases like mine before.  This was the first step toward regaining some sense of control in a journey defined by uncertainty.

Genetic Testing and Understanding My Diagnosis

At MSK, my care included genetic testing to better understand inherited cancer risks and guide long-term monitoring. The tumor specific genetic results are still pending, but the germline (bloodline) testing was completed. This panel screened for over 90 cancers, and the results came back reassuring: no variants of clinical or uncertain significance were detected, meaning no inherited mutations were found that would increase my cancer risk or indicate a hereditary cancer syndrome.

My cancer was classified as Stage 4a, M1b LAMN (low-grade appendiceal mucinous neoplasm). To break that down:

• Stage 4a indicates that the disease had spread outside the appendix but was still limited to the abdominal cavity.
  
• M1b refers to the presence of peritoneal implants, small deposits of tumor on the surfaces of organs in the abdomen.
  
• LAMN describes a low-grade appendiceal mucinous neoplasm, a slow-growing type of appendix cancer that can produce mucin (gel-like fluid) and sometimes spread within the abdomen.
  

Understanding my stage and tumor type helped me make sense of why the surgery was so extensive, why HIPEC and chemotherapy weren’t recommended, and why ongoing surveillance and potential additional surgeries might be necessary. It also provided clarity and reassurance for both myself and my family, even as we continue to wait for the tumor-specific genetic results.

Post-Surgery Recovery and Life in Surveillance

Recovery from such extensive surgery is a work in progress. Physically, my body was changed — major organs removed, my abdomen altered, and my belly button gone. I experienced physical limitations, fatigue, food aversions, nausea, and chronic constipation. A slow return to daily routines and support from loved ones made a difference.

Emotionally, recovery was a mix of relief, grief, and adjustment. Relief that the diagnosis was clarified, grief for what had been lost, and adjustment to the new reality of living with a rare cancer. Sleep was often difficult — insomnia and trauma-related nightmares became part of my nights, a reminder of the stress, uncertainty, and medical experiences I had endured.

Now, under Active Surveillance, I have regular follow-ups with my MSK team. Each scan and appointment is a reminder of both fragility and resilience — living in the tension between hope and vigilance.

This ongoing chapter of my journey is what inspires my blog: sharing lived experiences, the reality behind rare diagnoses, and the importance of advocacy and finding the right specialists.

Finding the Support I Needed

Throughout this journey, ongoing support has been essential. My primary care physician, Dr. Miller has monitored me closely, and I have weekly sessions with a therapist specializing in PTSD and medical trauma, as well as assistance from a nutritionist at MSK. I’ve come to depend on the appendiceal cancer community through attending Appendicure webinars,being a member of the Facebook group, and direct exchanges with other patients and caregivers. 

Through one of these connections, I met Amanda, the founder of Appendicure. We connected through posts and comments on Facebook, through Messenger chats, and then in a pivotal moment she asked me to contribute to the Appendicure blog. This gave me back something I had lost during this journey: the opportunity to help others, share my voice, and use my experiences to guide, comfort, and advocate for patients facing rare cancers.

Ten months post surgery, I have regular 3 month follow-up CT scans and bloodwork with my MSK team. Each scan and appointment is a reminder of both fragility and resilience — living in the tension between hope and vigilance. This ongoing chapter of my journey is what inspires my blog: sharing lived experiences, the reality behind rare diagnoses, the importance of advocacy, connection, finding the right specialists and the emotional toll it takes. Appendicure is my community and family.