NET Intro - Your NET Elevator Speech

The NET Intro card can be filled out digitally using a PDF editor or printed and filled out.

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WHAT IS A NET ELEVATOR SPEECH?

An elevator speech is a way of introducing yourself. The reason it’s called an “elevator speech” is because it should be short enough to say during a brief elevator ride.

We define a NET elevator speech as a two-sentence synopsis of your NET cancer which can be communicated in 30 seconds or less. If you were in an elevator with a NET expert and had only 30 seconds, your NET elevator speech is your concise two-sentence introduction that relates the most important things they need to know about your disease. This is your NET Intro, the way you introduce yourself to someone who doesn’t yet know your NET history.

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Your NET elevator speech consists of two sentences, and

contains items #2-6 on page 1 of NET VITALS.

SENTENCE #1:

1. Your relationship to NET:

If you are living with NET, you might start the sentence with:
- - “I am living with…”
  - “I was diagnosed with…”
If you are an ally or loved one of someone living with NET, you might start the sentence with:
- - “My spouse/child/parent/relative/friend/other relation is living with…”
  - “My spouse/child/parent/relative/friend/other relation was diagnosed with…”
Note: Because we believe words are powerful, we discourage identifying yourself as a patient or by the disease. Instead, we encourage using “I am living with” or “I was diagnosed with” or “I was diagnosed X year with…” or even “I have…” Some people even say “I am living well with…” because it gives the message that people can thrive while living with NETs.

2. Tumor differentiation:

This is either "well differentiated" or "poorly differentiated.”
It refers to how abnormal the cells look when compared to the surrounding healthy, non-cancer cells under the microscope.

3. Tumor grade:

This is grade 1, 2, or 3. If you know your ki-67, you can add this element, as it determines the grade of the tumor.
This refers to how quickly the tumor cells are dividing. It can be found on your pathology report, a report that is done whenever tissue is taken from your body, usually from a biopsy or surgery.
Grade is different from stage which refers to how far the cancer has travelled from the original site of the tumor. It’s easy to confuse grade with stage, but they actually say very different things. The general public is familiar with staging, because it is a common way to describe a cancer and gives an idea of someone’s prognosis. However, it’s important to remember that stage 4 with neuroendocrine cancer does not mean the same thing as stage 4 with other cancers.
Please note that lung NETs are not classified by grade; they are classified as typical carcinoma, atypical carcinoma, large cell neuroendocrine carcinoma, and small cell carcinoma. Pheochromocytomas and paragangliomas are also not classified by grade.

NETWise Infographic Stage, Differentiation & Grade, courtesy of Neuroendocrine Tumor Research Foundation - Download Here

Lung NET infographic, courtesy of Neuroendocrine Tumor Research Foundation - Download here

Lung NET resources can be found here.

4. Functional status of the tumor:

This is either functional or nonfunctional.
This means specifically whether the tumors produce hormones (functional), or they do not produce hormones (nonfunctional).
This is different from stating if you experience symptoms, since symptoms could be from a variety of reasons. This specifically refers to whether or not your tumors produce hormones that cause symptoms.

5. Site of tumor origin and metastases:

This is where your tumor originates from (i.e. pancreas, small intestine, lung, colon, etc.) and anywhere else it might be located (i.e. liver, bones, etc.).
The primary site of your tumor remains the same even after it has been removed and even if you no longer have evidence of disease.
One reason the primary site of your tumor is important is that it helps your doctor determine what treatment options are available and best suited for you.

6. Year of diagnosis (optional)

This is my example of sentence #1:

"My husband has been living with well-differentiated, Grade 2 (ki-67 15) nonfunctional pancreatic NET with metastases to the liver and bones since 2015.”

"My husband was diagnosed in 2015 with well-differentiated, Grade 2 (ki-67 15) nonfunctional pancreatic NET that has metastasized to the liver and bones.”

SENTENCE #2:

Sentence #1 is foundational. Once you’ve mastered sentence #1, then -- and only then-- are you ready to build on it by adding sentence #2. Most of us have an easier time with sentence #2 because we usually know what treatments we’ve had.

Sentence #2 consists of a brief summary of your surgeries and treatments. The key here is to be succinct.

This is my example of sentence #2:

“My husband has had surgery, somatostatin analog (lanreotide or octreotide), liver directed therapy, and PRRT.”

There it is—your NET story as a brief two-sentence NET Intro that takes less than 30 seconds. While it may sound simple, we recognize that building your elevator speech may not be easy. Furthermore, it takes work and practice to become comfortable delivering your elevator speech. Write it down. Have it handy. Then practice, practice, practice! It takes repetition to become fluent in this new language so it rolls easily off the tongue.

WHAT ARE THE BENEFITS OF LEARNING YOUR NET INTRO?

You are learning to “speak NET” so you’re on the same page as a NET expert. By sharing your NET elevator speech, you are communicating the critical elements that they need to know to guide treatment decisions.

It’s important that YOU know and understand your own disease, and don’t just rely on your medical team to do so. Learning to speak NET helps you know what information or treatments are relevant to you. When you participate in educational meetings, you might be better able to interpret and apply the information. When you look at clinical trials, you might be better able to understand whether you are a candidate for certain trials.

It helps you communicate the essential elements of your neuroendocrine cancer concisely, clearly, and efficiently. Communicating the critical elements of the disease efficiently means that time can be better spent on other things such as talking about treatments or getting your questions answered. This might be in a support group setting or with others living with NETs. This might be when speaking to your NET expert at a medical appointment or perhaps a NET expert you meet at an educational conference. Using your NET elevator speech, you can speak NET to better communicate your “NET VITALS.”

WHAT SHOULDN’T BE IN YOUR NET INTRO?

Words are powerful. We discourage people from identifying themselves or their loved ones as a patient or as a disease. We want to use words that empower and that show we view ourselves as whole people rather than being defined by an illness.

Note that your NET Intro is not the same thing as your story. There is a time and a place for telling your story of how you were diagnosed and how NET has impacted you personally. Giving an elevator speech does not replace telling your story; it is a different skill that serves a different purpose.

Knowledge is powerful! In this rollercoaster journey where things may sometimes feel out of control, here is something you can control. Learning your NET elevator speech helps you to communicate in the language of NET experts. We can be better patients and advocates by bridging our knowledge gaps and understanding foundational NET terms and concepts.

Now go forth and build your own NET elevator speech. Let’s learn to “speak NET” together!

DOWNLOAD THE NET INTRO CARD

The NET Intro card can be filled out digitally or printed and filled out.

Esta página también está disponible en español, se encuentra aquí.

RESOURCES

If you're not sure what the above terms mean or how to find the differentiation, grade, or ki-67 on your pathology report, we recommend the following resources:

NETRF’s NETWise infographic “Stage, Differentiation, & Grade”
NETRF’s NETWise podcast Episode 1: What You Need to Know About NETs
NET VITALS webinar (starting @14:20)
Pathology webinar by Dr. Sue Chang (starting @ 36:43)
Symptom Management presentation by Dr. Del Rivero (covers functional tumors and management of carcinoid syndrome)

NOTE: NET Intro is a document for personal use only. It is not submitted to nor collected by LACNETS. It is a document for you to fill out and take with you to your physician appointment.

This document is intended for informational and educational purposes only and is not a substitute for professional medical advice. Always consult with your physician or health care provider.