09/07/2023
Hello, my name is Robert and my best friend is named Elodia. In 2018, I was fortunate enough to marry this elegant lady and make my best friend my life’s companion! If you have discovered this page, odds are you are looking for answers to something very specific. Unfortunately my Elodia was diagnosed with that specific thing in 2017. Gastrointestinal Neuroectodermal Tumor - GNET. What is that? That is, potentially, the purposeful question that might have landed you here. How did I get this? How do I fight this? What do I do? These are all immediate and intense interrogations that play out both psychologically and physiologically.
Malignant gastrointestinal neuroectodermal tumor (GNET) is a rare malignant tumor. It is also referred to as clear cell sarcoma-like gastrointestinal tumor (CCSLGT). It is an aggressive tumor with a high rate of local recurrence, metastases, and early death from disease. Its pathogenesis is not known. It shows evidence of neural differentiation and lacks immunohistochemical and ultrastructural evidence of melanocytic differentiation. It needs to be distinguished from various mimickers owing to its aggressive course. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5705503/.
This paragraph is the communal product with most “google” searches for gastrointestinal neuroectodermal tumor. In summary GNET is rare, it doesn’t seem to have an established or accepted treatment plan, it can be aggressive. So what now? The journey to eradicate this disease begins and individual Oncologists go to work. To figure it out.
Let’s help them figure it out. Let’s make a forum that consolidates real life decisions. Let’s help oncologists collaborate. Let’s make the next case study. Let’s eradicate GNET forever. That is the intent of this page. Elodia will be posting her journey to this page. Collectively we want to describe the challenges she has faced and highlight as many variables as possible. To include symptoms, treatments, keeping faith, nontraditional treatment options, case studies, facilities, and really anything that can be used to answer the questions that brought you to the fourth paragraph.
“God will give me strength”. And he will give you strength too! Pray!
