Blog

August 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“I’m new to this group… am feeling scared and alone.”

These were the words of a newly diagnosed patient whose first post jumped off the NCAN facebook page at me one morning this past summer.

Before I could put my coffee cup down to respond, those little dots began to appear. Someone else was replying at that very moment. Within minutes, the comment counter showed over 10 replies; and then quickly that number doubled. This patient’s introduction was so simple and clear. Everyone identified with her plea, and everyone wanted to help. I added my brief (and hopefully) reassuring greeting. Over the next hour or so, this newly diagnosed NeuroEndocrine patient was offered support, affirmation, and friendship by over 100 new friends who said ‘I know just how you feel’.

The response to learning you have cancer is never a shrug of indifference. Learning you have a rare cancer is mind boggling. If you are fortunate, you quickly realize the need to become your own best advocate. We attempt to devour medical data to educate ourselves, and we aim to collect anecdotal patient stories to learn how to cope with our new identity.

I attended my first NCAN conference 6 weeks post debulking surgery in 2017. I’ve since added 2 more. Each time, I have learned volumes of medical data from the presentations and added cherished friends to my Neuroendocrine family. Last month, NCAN was able to offer its first of three virtual conferences for 2020. I was amazed at the near seamless transition from in person to virtual. I knew we would continue to hear the informative presentations by the NETs specialists and advocates, but would the feeling of companionship and solidarity with other patients be expressed? Heck yes! This NCAN conference delivered again just as they have done many times before. Many patients shared sentiments so similar to those above as they visited in the chat rooms and the zebra lounge. A flurry of emails and text messages following the conference supported this as well! At the end of the day, our attendees had been educated and community supported.

Another Neuroendocrine patient has said “If you are working on something exciting that you really care about, you don’t have to be pushed. The vision pulls you in.” — Steve Jobs

And so it goes with the staff and volunteers at NCAN. They have a vision to educate and promote awareness about our rare disease. In our year of 2020, their vision had to adapt, and it continues to deliver. The excitement generated by these folks gives hope and empowerment to all attendees. The next Virtual NCAN Conference is scheduled for October 17. The final 2020 conference will be November 21. Both will have different topics and presentations. Both will have numerous opportunities to visit and connect with other patients and caregivers. Both are not to be missed. Please come join in our vision to increase Neuroendocrine Cancer awareness and REGISTER TODAY.

I’ll see you there!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.