Chapter 7: A Good Day in Charlotte or What is a Zebra? 3/25/17

A Good Day in Charlotte or What is a Zebra? 3/25/17

Three weeks ago we had never heard of Neuroendocrine Cancer. Now our heads are exploding. But that is a good thing.

We were lucky to have the chance to attend the Neuroendocrine Cancer Patient Conference in Charlotte today. It was organized by NCAN (Neuroendocrine Cancer Awareness Network), which hosts these conferences around the country. Wow. I’ll spare you the details, but here are the highlights:

  • The couple who founded NCAN has been doing this since 2003. Maryann has been a NET patient for 16 years. She has so much experience and insight and energy, it is amazing.
  • We heard from five physicians* who specialize in this disease: two surgeons, two medical oncologists, and one gastroenterologist. They were knowledgeable and experienced. Abreast of the current diagnostics available, the current treatment available, as well as what’s in clinical trial and what’s coming soon. More than once we heard “…five years ago this would not have been the case…” which was very encouraging. They each anticipate good things ahead in treating and managing this disease. *(Dr. M from Duke, whom we will see in April, was one of the presenters.)
  • We heard from three patients (I think all of them were diagnosed more than 10 years ago) on the importance of patient advocacy.
  • Sitting at our table was a couple who flew from Toronto (!!) to hear these presenters. Brenda was diagnosed about a 1.5 yrs ago, and has had 70% of her liver removed. WOW! She looked great and she and Joe were happy and healthy and doing well. Talk about inspiring.
  • The patient panel polled the crowd and there were many patients in the room who were diagnosed 1, 3, 5, 10, 15+ years ago. They all looked perfectly normal and healthy. It was amazing to see. (Are you getting the picture? This is a bizarre cancer, not your usual cancer treatment/survival story.)
  • Awhile back, NCAN began using the zebra to represent NET patients. The zebra does this well because no two zebra’s stripes are the same and no two NET Cancer patients are the same. The other reason is that in medical school students are taught when hearing hoof beats think horses, but not zebras. In other words, look for the common not the uncommon or rare. Advocacy for this disease is helping the medical community learn to consider the uncommon.
  • As we walked out, we both felt great relief. Relief to know that information is available, relief to meet others who have been where we are, and relief in having a little bit of a clue of what might be ahead. These zebras say it was a good day.

zebra

Photo credits to Mother Nature Network

Special thanks to Don’s mom for hanging out with the boys while we were in Charlotte, and shuttling Colin to swim practice. And to nephew Caleb and niece Caitlin for offering some entertainment. And to a good friend for giving Sam a ride to flag football practice. And also to Rev. Sam Perkins (our youth pastor) for treating the boys to froyo and a good talk later in the afternoon. Colin said it was a fun day and when I asked our Sam how his day was, he said, “Sam P is so cool. He’s like my step-dad.” Me: I think you mean 2nd dad? Sam: Yeah, that’s it. ❤

 

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