February 1, 2023

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

If you spend anytime at all discussing our Neuroendocrine Cancer with other NETs patients, you quickly learn that there is a whole new vocabulary to master as you learn about our disease. Identifying labels such as our primary tumor locations are valuable tools as we discuss our challenges. Our Tumor Grade values also provide necessary context for meaningful and beneficial conversations. These values are especially important to insure that we are not making incorrect assumptions based solely on our own experiences.

Our labels in patient conversations can differ from those terms and phrases used by our medical providers. It is always best to clarify your understanding of new words and abbreviations with your physicians. There are some labels within our Neuroendocrine World that can be interpreted incorrectly without a basic knowledge of Neuroendocrine Tumor behavior. Those misunderstandings can then become be misleading.

Let’s take a look at INDOLENT, N.E.D. and CURED.

INDOLENT is frequently used by our physicians to describe our Grades 1 and 2 Net Cancers. Indolent rarely refers to Grade 3 unless the tumors are well-differentiated and responding well to treatments.

Merriam-Webster-Webster Dictionary tells us that indolent can mean: averse to activity, causing little or no pain, and/or slow to develop. Those of us who have been told we have a slow growing cancer need to be reminded of this definition. Being indolent is a hallmark for a patient who is in a watch and wait mode of surveillance .

N.E.D. = No Evidence of Disease.

Once a Neuroendocrine patient connects with other previously  diagnosed NETs patients, they quickly learn that NED is our buzz word. NED IS GOOD in this world of an incurable disease!  Everybody wants to be NED! However, with time, Neuroendocrine patients learn that the correct interpretation of NED is: “no cancer is currently detectable in the body’. MDAnderson’s website is quick to remind us that “currently detectable” is the key phrase. Don’t get me wrong, NED is still great and wonderful and worth celebrating, but don’t become overconfident or complacent in your surveillance of your disease. It can be a precarious state. Cancer cells might still be lurking at a level that, at present, can’t be detected.

CURED is a phrase less often used by our Neuroendocrine Specialists and highly NETs knowledgeable physicians. Cleveland Clinic tells us that cured means “completely gone and is not coming back”. Merriam-Webster Dictionary defines it as a “complete restoration of health”. Our Neuroendocrine Specialists know that there are a small handful of situations where a surgical intervention might be considered curative, but that for the majority of us, cured is simply not yet in our disease vocabulary.

So what do we, as NETs patients, do with these labels? We use them to our advantage.
When your physician tells you your disease is slow growing and indolent, you take a deep breath, give thanks, and stay current in your treatments and education about your cancer. You work to incorporate this diagnosis into your life without a dark cloud hanging over you.

When you hear that you have been deemed NED following a treatment or a scan, you enjoy a quick celebration and promise yourself, your family, and your friends that you will not become lazy or forgetful about your surveillance. And, you accept that NED might not be forever. NED truly means right now by the best means available to assess your status. Next month, it could be different.

And, when you hear that you are cured of your Neuroendocrine Disease by someone other than a NETs specialist who is familiar with your case, you say “thank you, but no thank you. I need a second opinion”. And, you do just that. You read more, learn more, and make connections with those physicians who truly understand Neuroendocrine Cancer and its unique behavior. Only then, would the word “cured” have merit.

When I try to label my personal case of Neuroendocrine Cancer, I know that I have accepted that NED and Cured will never be a part of my prognosis. Indolent, however, I am happy to embrace. Being indolent also means that most likely my disease is evolving. That might be progression, or it might not. But I know for sure that it is not stagnant.

We, here at NCAN, recognize that a healthy mindset with this disease requires an understanding of the most basic labels and classifications. Knowledge is power when dealing with an incurable (at present) disease. We encourage you to visit the Resource Room and Glossary on the NCAN website and to take advantage of the Podcasts and Videos available on the NCAN YouTube channel to stay educated and informed. Also, make time to join us at an upcoming Patient Conference where you can build your NETs knowledge surrounded by the support of the NET Community.