Perhaps you’ve had this experience…you’re seeing a healthcare provider (nurse, physician, imaging technician, lab technician for example) and they aren’t familiar with neuroendocrine cancer (aka neuroendocrine tumor or NET). Even mentioning Steve Jobs or Aretha Franklin gets the response “I thought they had pancreatic cancer.” Or you’re talking with friends who have never heard of NET. Part of our experience of living with a rare cancer – and a mostly invisible disease at that – is having the opportunity to help educate others about NET and increase awareness. Why does greater awareness matter?
I think back to my original symptoms that started around the year 1999 when I was forty-two years old. Severe abdominal pain and bloating led me to the closest ER where I was given morphine to ease the pain. I thought I had food poisoning and didn’t think anything else of it. When it happened again a few months later, the same experience repeated: morphine in ER, return home, and rest. My primary care physician referred me to a gastrointestinal (GI) specialist. I was given a prescription for an anti-spasmodic and sent home. The abdominal pain/bloating/ER cycle happened repeatedly over a period of six years without any orders for imaging until another GI physician ordered a CT scan which led to my diagnosis. It turns out my small intestine was partially obstructed by a slow-growing tumor that had metastasized to my liver.
NET patients had an average of almost twelve healthcare visits before being properly diagnosed.
Unfortunately, my story is not uncommon. The Global NET Patient Survey published by the International Neuroendocrine Cancer Alliance (INCA) revealed some statistics regarding the number of years from onset of symptoms to diagnosis and the number of healthcare professionals seen before receiving a diagnosis. In the survey, the average number of years from onset of symptoms to diagnosis is fifty-two months! Sadly, 58% are metastatic at the time of diagnosis. NET patients had an average of almost twelve healthcare visits before being properly diagnosed.
Each one of us has the ability to help change those numbers in our own community. There are opportunities to share more about NET and add one more person to the extended global family of NET awareness.
Consider how we might work together to complete this cycle:
For those of us who have gone through a period of misdiagnosis, we know all too well how important this communication is.
Here are some suggested ideas, starting with healthcare providers. Please send us your suggestions so we can make this a more NET-friendly world and help others get diagnosed early in their disease.
1. Bring NET materials to your physicians and healthcare providers.
The Healing NET Foundation offers a “Neuroendocrine Tumors: A Primer for Healthcare Professionals." This booklet summarizes NET information, ways to recognize it and treat it. Bring a copy to all of your appointments as a way to help communicate with your providers.
LACNETS Rack Cards – These cards contain information on LACNETS with links to the LACNETS website for educational videos and resources. If you’d like rack cards shipped directly to you, please email events@LACNETS.org.
NET VITALS – This is a communication tool for physicians & patients with the top 20 questions vital to understanding neuroendocrine cancer. It is helpful for patients to understand NET terminology and for physicians to learn important terms in treating NET patients. Fill it out and bring your completed NET VITALS to your appointment(s)!
2. Invite your healthcare providers to a LACNETS monthly meeting.
3. Fundraising! Let's get creative!
Social Media - Creating a fundraiser on Facebook is super easy and a great way to reach a wide audience. Create one for your birthday, special occasion, or just because it will help people understand neuroendocrine cancer! In 3 easy steps, you can set up a Fundraising Campaign. Start by searching for LACNETS in the list of non-profits.
Community events
Ask your favorite local business if they will support a NET Awareness Day by contributing a percentage of sales.
Hold a bake sale on your block.
Share your story! If you’re open to being public about your NET experience, these personal stories are often the most touching and remembered articles and videos. Don’t forget to reach out to your local TV station, newspaper organization and local medical organizations to represent NET!
We can do this together! And truly make a difference!
One of the most heartwarming experiences of the LACNETS meetings is reaching more patients. The stories of patients meeting other patients, meeting new friends and sharing their journeys inspire others. Sometimes, a NET patient’s spouse or family member might attend a LACNETS meeting alone and then bring the person living with NET to a later meeting. We are always grateful to learn that we have helped in their medical journey. Let’s complete the circle and give back to our healthcare professionals by sharing everything we’ve learned!
Towards a more NET-fluent world.
A gift of any size supports LACNETS’ free of charge programs and services. LACNETS is a 501(c)3 non-profit. Donations are tax-deductible. Tax ID # 20-0062062.
Written by Giovanna Joyce Imbesi
LACNETS Founder & Patient Advocate