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? Continue reading here.
“Does it spark joy?” This is the central question of the widely popular Kondo organization method from Marie Kondo’s best-selling 2014 book The Life-Changing Magic of Tidying Up. This year, the popular Netflix show Tidying Up with Marie Kondo swept the nation with a fresh wave of decluttering. Donation centers overflowed. Social media feeds showed off newly decluttered homes. Read the full-post here.
Change. Change is inevitable, happening daily and in the moment. A delayed flight, change in schedule, unexpected detours. Recently, SoCal had back-to-back earthquakes which literally shook us awake with no advance notice. As patients, we think ‘what body will I wake up with tomorrow?’ Will the pain that was in one place now be in another place? Will my symptoms be better or worse? We measure change in millimeters with every scan--smaller, bigger, stable. More, less, in normal range, out-of-range. Read more here.
On Saturday, June 8th, the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) presented the 2019 Annual Los Angeles Neuroendocrine Tumor Patient Education Conference in coordination with Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, City of Hope, and UCLA Health at Cedars-Sinai Medical Center. Each participant was given a tote bag, printed with the LACNETS motto, “Connect, Learn, Thrive.” Click here to read more.
This article will answer more frequently asked questions and provide links to helpful videos, articles, and patient resources. Read more here.
By now, you’ve probably heard of PRRT. Maybe your doctor recommended it. Or maybe you’ve heard another patient mention it on a discussion board. You may have heard it’s a type of radiation. Or you may have read that it’s a promising new treatment available to NET patients. Right now, these four letters – P-R-R-T– are very powerful letters. They are packed with information and meaning. PRRT is the hottest topic in the NET community, sparking much interest and discussion. This article is intended to give a general overview by answering some frequently asked questions about PRRT. Read more here.
In this third and final part of our NET marathon training series, we will discuss rest and recovery. While putting in mileage (i.e., education, research, medical appointments) is important in marathon training, there is also an art to recovery. Click here to read the full blog post.
In this article, we introduce a new strategy of re-training our body’s natural response to stress. We take the offensive against our stress by first understanding our own individual response to stress, so we can then change the way we react. Click to continue reading.
Every March, thousands gather to run the Los Angeles (LA) Marathon. This annual event serves as a reminder that living with neuroendocrine tumor (NET) is often compared to running a marathon rather than a sprint. While it might be obvious, let’s first talk about what this metaphor means. Click here to read more.