WHO WE ARE

The Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN) is a forum for people affected by Carcinoid Cancer and related Neuroendocrine Cancers, to learn from the experiences of others and to share their own.  With a focus on education, we seek to promote awareness of the need for early diagnosis, appropriate treatment, and better monitoring of Carcinoid Cancer.

THE HISTORY OF PCCAN

Seven people gathered at the first Central Pennsylvania Carcinoid Support Group held November 1,  2003.  It was the first opportunity most of us had to meet other people with the same diagnosis.   It was moving to share our personal stories, successes, frustrations, and hopes about living with Carcinoid Cancer with others who truly understood.

We discovered a unifying theme as we listened to personal stories that often included tales of misdiagnosis, delayed diagnosis, incorrect treatment, no recommended treatment, and no monitoring of the disease.   A desire to impact this situation was another unifying theme that has continued in our patient-directed group.

We have met every other month since that first meeting and our group continues to expand and evolve.  However, our purpose and vision remain the same and the words spoken by John as we left our first meeting still ring true.  He said, “You know what this means don’t you?  You are not alone.”  Indeed, if you or your loved one has Carcinoid Cancer,  you are not alone!

 

Seven people gathered at the first Central Pennsylvania Carcinoid Support Group held November 1,  2003.  It was the first opportunity for most participants to meet others with the same diagnosis and it was moving to hear the personal stories, successes, frustrations, and hopes of living with Carcinoid Cancer from those who truly understood.  A unifying theme was revealed through the sharing of personal stories, which often included tales of misdiagnosis, delayed diagnosis, incorrect treatment, no recommended treatment, and no monitoring of the disease.   A desire to impact this situation was another theme that continues in our patient-directed group.  While the group has changed and continues to develop, our purpose remains the same and the sentiment expressed by John as we left our first meeting still rings true: “You know what this means don’t you?  You are not alone.”  Indeed, if you or a loved one has Carcinoid Cancer,  you are not alone!

Remember the Zebra

In medical school, students are taught “when you hear hoof beats think horses,” meaning when presented with a symptom a physician should consider the most common causes associated with those symptoms.

This adage works well when the disease is a common condition.  But for people with uncommon ailments such as Carcinoid Cancer, this often results in years of misdiagnosis due to symptoms that frequently mimic more common diseases.

The medical community must remember to think beyond horses when they hear hoof beats because the approaching animal could be the less common zebra. This is why the message of the Carcinoid Cancer community is  REMEMBER THE ZEBRA.

PCCAN Acknowledges

THE SPONSORS OF THIS WEBSITE 

THE GARAM GROUP, LLC

Syracuse, NY

 

OUR ADVISORS

 

THE CARCINOID CANCER FOUNDATION
New York, NY

 

HAROLD A. HARVEY, MD

HERSHEY MEDICAL CENTER
Hershey, PA

 

ARTIST JOANNA BARNUM 

FOR DONATING ORIGNAL ARTWORK, ZEBRA