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Oct. 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Lauren’s Story

Posted by Valaree DonFrancesco

My name is Lauren, I’m 23 years old and I live in Boston, MA. Two years ago, before my senior year at college, I was given the news that nobody ever wants to hear: I was told that I had a rare form of appendix cancer. Cancers and tumors of the appendix are extremely rare, once thought to be diagnosed in about 1,000 people worldwide each year. In other words, the lifetime odds of being diagnosed were thought to be about one in a million. Appendix cancer is cancer that starts in the cells lining the inside of the appendix. There are a number of different types of cancers of the appendix and the different types are associated with different behaviors and treatments that are offered. The same as breast, colon, or other forms of cancer, it’s rarely ever as simple as just removing the cancer-afflicted organ, even though the appendix has no known purpose. More often than not, the tumor has had an opportunity to spread over years or has been misdiagnosed.

After what they thought to be a routine appendectomy, the pathology had returned and I was originally misdiagnosed by my appendectomy surgeon, being told I had a more aggressive tumor and that it was of high-grade. She herself said that in all her years she had never seen an appendix tumor and knew nothing about them. I learned from appendix cancer specialists (surgical oncologists) weeks later that the tumor of my appendix was a mucinous neoplasm instead, much more slow moving and low grade, LAMN for short. Had I not seen those two specialists, I would have been completely lost and misinformed. While this disease is so rare and specialists are few, finding and meeting with a specialist and getting the right information is very important when diagnosed with appendix cancer and/or PMP. The number of reported cases has increased over the past decade, but it is not certain whether incidence of appendix cancer is actually increasing or the rate has changed due to misdiagnosis or misclassification in the past. The average age of onset is between 50 and 55 years, therefore due to my age at the time (21) and an early diagnosis, I have been spared from treatment at this point in my life other than annual MRI scans. The specialists were hopeful that all of the afflicting mucin from my tumor was removed when my appendix was taken out and that I have a low risk of a recurrence. However, many patients lack clearly defined symptoms until the disease has reached an advanced stage. Through my initial research, I learned quickly that appendix cancer and PMP is not listed or recognized by the American Cancer Society, Dana Farber or many other larger cancer centers or organizations. Rare cancers like appendix cancer often receive no government funded research too. However, I found the Appendix Cancer/Pseudomyxoma Peritonei Research Foundation (ACPMP for short), the only organization dedicated to funding research and educational programs for appendix cancer.

One year following my diagnosis, in July of 2018 I took on a full-time role with the ACPMP Research Foundation as their first staff member, becoming their Development and Communications Manager. While my rare cancer diagnosis is unlike most, I know that not everyone affected by this rare disease is so lucky, so I hope to be an advocate for those who are currently fighting.

I am grateful every single day I am healthy and get the opportunity to be apart of the ACPMP Research Foundation’s worthwhile mission. This last year has been more than I could have ever imagined, so much love, gratitude, and purpose. The individuals with ACPMP are truly the most remarkable people you will ever meet, each and every one of them having faced this disease as a caregiver, patient, or friend and transforming their experience into a selfless opportunity to help others. I am so lucky to be able to work with them. I am so thankful to have been able to transform my own ugly diagnosis and turn a lemon into lemonade.

For rare cancer patients, access to proper care and treatment is not as accessible, lots of people have to travel, which then require battles with insurance. Another challenge is the lack of readily available information and limited support opportunities. Many patients face misunderstanding with this rare cancer from those around them due to its rarity and complexity.

I hope that my story gives other rare disease patients hope. Hope that their diagnosis doesn’t have to define them in a negative way, hope that they too can actively advocate, raise awareness, push for research, and that maybe they could even turn it into the opportunity to work for the organization that speaks to their rare disease cause.