NCAN Blog: What’s Your NETs Elevator Speech?

November 1, 2021

By Anne Dabbs,
NCAN TN Chapter Leader, NET Patient

In the time it takes to share a greeting on an elevator with a stranger, we need to have a description for our rare, incurable disease that does not lead the listener to a “deer in the headlights” reaction. This year, for NET CANCER AWARENESS DAY, we are asking everyone to begin crafting their personal elevator speech.

We need to be ready to tell our cancer story concisely and correctly every time we have the opportunity to share awareness of Neuroendocrine Cancer.

Strangers, new acquaintances, even some family and friends need to know just enough so they are motivated to encourage and support us, and to be sincere in their efforts to want to help us. INCREASING AWARENESS is central to our Neuroendocrine community’s expansion into the world of research. Heightened awareness benefits patients, physicians, and researchers as it leads to enhanced education, improved diagnostic tools and additional treatments.

What have I learned in five years of crafting my elevator speech?

I never begin by stating that I am a Stage 4 cancer patient. A casual listener will immediately start looking for signs of my demise. The subsequent comment about Grade 1 is wasted. Stage 4 NETs cancer typically does not equal Stage 4 prognosis of more well known cancers.

I rarely tell the location of my primary tumor as that (important to me) detail immediately will erroneously classify me as a colon cancer patient.

And I avoid details of my monthly SSA injections which will likely involve a long winded, unnecessary discussion about chemotherapy (SSAs are a hormone therapy).

Make your words count in the effort to raise awareness about Neuroendocrine Cancer so that others will be motivated to help.

“I have a rare, incurable, but treatable Neuroendocrine Cancer diagnosis. It has metastasized to many locations in my body, but it is a very slow growing cancer. With proper surveillance and a treatment plan crafted for me by my specialists, I anticipate a reasonable life expectancy. Thankfully, with increased awareness and research, new developments are giving us hope for earlier detection and improved treatments every year.”

I have shared my personal elevator story with you in hopes that you will share yours in the comments below. Together we will work to raise our voices for our Neuroendocrine community. Together we will make a difference.

And, as always, if you need anything we are HERE and ready to help.

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.

Comments(9)

Toni says
April 2, 2022 at 8:20 pm

I thank you all for your comments, I too have had NET for over 10 years and its just now started to act up and I’m on lanreotide right now Your comments give me hope and let me know I’m not alone here in Zebra land.
Nancy Lewis says
March 4, 2022 at 11:24 am

Claire, I completely relate. Like you, I avoid Stage 4, and, for me, where my cancer has metastasized (liver, in my case). I always say I have some not-so-great news and some great news, leading to the incredible team of sub-specialists I have who are genius and have given me more options than I would have though possible. I also tell them I’m accepting members of “Team Positive,” who can be with me in believing in incredible outcomes and sending positive vibes.
Tim Tusick says
December 17, 2021 at 8:51 am

Right on Ann as I identify totally wot your elevator speech. TY
Sandra W Butler says
December 16, 2021 at 2:46 pm

Great article, Anne! You’ve always been extremely helpful in our community, especially when I was first diagnosed this year. I am a grade 3 NETs patient. My elevator speech is “I have an aggressive form of a rare cancer called Neuroendocrine cancer. It has spread to other areas of my body. Although incurable, the good news is this cancer is treatable as long as my body continues to respond to therapy. I most likely will never go in remission but with God’s grace I plan to live a long life.”
Nancy Kerr says
November 15, 2021 at 11:13 am

Blogs are Always filled w helpful and accurate advice!
Claire McCabe says
November 10, 2021 at 7:56 am

I had a NET tumor removed from small intestine a year ago. I was told they got it all. I have been monitored by scans and no spread it reoccurrence. How do I share that news?
- REPLY
  Anne says
  November 10, 2021 at 6:15 pm
  
  Hello Claire, thank you for reading and commenting. What a wonderful report you have received following your surgery. And we of course hope it is true and accurate…… but, if you are learning about this disease, you know that reoccurrence is not unusual. So I hope you continue to be monitored on a regular basis. Perhaps that is the news you share…. That you are currently NED ( no evidence of disease), but that you will continue to be monitored for 5-10 years. Best wishes
Alysia Christensen says
November 9, 2021 at 3:39 pm

Right on Anne… as usual!!!
- REPLY
  Anne says
  November 10, 2021 at 6:09 pm
  
  Thank you my friend!

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What’s Your NETs Elevator Speech?

Comments(9)

Toni says

Nancy Lewis says

Tim Tusick says

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What’s Your NETs Elevator Speech?