COVID 19 from NET Patient and Advocate Perspective

The unknown is scary. The news footage shows a reality but what is not known about COVID 19 may unsettle us the most.

Those of us who live with NET cancer may understand this more than anyone. We LIVE with this uncertainty everyday because of our unique diagnosis, the variance in treatments, and the unknown of how and when it’s going to affect us in the future. When someone who is newly diagnosed asks me how do you possibly deal with this unique and frustrating disease, I tell them the most important thing is to find a physician that is uniquely trained and as experienced as possible in understanding this complicated disease, and fits YOUR model of someone you can trust to help you feel safe and welll cared for.

That’s where I live at this moment in the face of COVID19…seeking advice from my NET physicians AND reaching out to my NET community friends who face the unknown every day. I know many of you have that trusted physician, and I encourage you to go there FIRST. I also know many of you are still seeking that expert or because of where you live and/or insurance/financial resources, you struggle to find someone.

Healing NET is committed to helping you bridge those gaps in "normal times"…through education and collaboration.

Specifically during the COVID 19 crisis in the weeks ahead, we will take additional steps to help close gaps in communication...sharing info from experts that may apply to the unique needs of NET patients.

We will also continue to share resources from other NET organizations who are there for you as well. Communication with the people you trust is important when the unknown is scary.

--Cindy Lovelace, Healing NET Co-Founder and PNET survivor

Click here to access our NET Primer by Topic section on Communication and Trust in the Physician/Patient Relationship. While written for HCP's, it underlines the need to find the right NET champion to help you navigate your care.