Newly Diagnosed

No one is ever prepared to hear the word you have cancer - hearing you have a rare cancer is even more complex as there are less trusted resources for you to refer to. 

We encourage you to join us at our monthly meetings where you will have the opportunity to discuss your questions and concerns with those who have been living with a NET diagnosis with those who have been living with NETs for years (in some cases over 25 years.)

In addition NorCal CarciNET Community has compiled a list of resources and videos to help you through this time. 

An Introduction to NETS - Presented at Bay Area NET Conference 2016.

Emily Bergsland, UCSF

We are fortunate to have two research institutions that have departments focused on the care of NET patients. UCSF, lead by Dr. Emily Bergsland and Stanford, lead by Dr. Pamela Kunz. Several sites maintain list of doctors from around the country that specialize in NETS, should you need a second opinion or do not live in our area. NETRF Doctor Lookup - Caring for Carcinoid Doctor Lookup

Newly diagnosed resource from other trusted non profits. Neuroendocrine Research Foundation.  Caring For Carcinoid Foundation.

Tips for the Newly Diagnoses - Presented by Josh Maillman at Bay Area Net Conference 2017

 

Checklist for the Newly Diagnosed (with thanks to carcinoid.org)
 
1)  You will need a specialist in NETs to provide a second opinion and to assist your local oncologist in your treatment because, unless you are an exception, the local doctors will not know about current treatments or advances in our disease. The main quality you need from your local oncologist is a willingness to follow your lead. 
Read more: Checklist for the Newly Diagnosed

Living With a Rare Cancer—My Dr. Seuss World.
From cancer survivor to patient advocate, oh, the places I have gone.

On May 25th, 2015, the ASCO Post published Josh Mailman's article on living with a rare cancer. 

"No one ever expects to hear the words "you have cancer," but over the course of the day, over 5,000 people in the United States are given that news.1 I first heard those words in the summer of 2007 and have been living with cancer ever since. At the time of my diagnosis, I knew this would forever change my life and my family's life, but it has done so in ways I could hardly have imagined. Little did I know that my life would be transformed into two of Dr. Seuss' books—Did I Ever Tell You How Lucky You Are? and Oh, The Places You'll Go. Let me explain."

To read the complete article visit the ASCO Post by clicking here.