I have what?

Since Zebra Talk is so readily available, we thought we would publish a to-do list for those newly diagnosed as well as the many experienced, savvy, empowered patients who are living with NET cancer and looking for fresh ideas and resources. These suggestions are only my opinion as a chronically ill patient and not those of a medical professional. although our community of NET patients is as a whole, one of the most sophisticated in the world.

 

NETS

 101                    FOR THE NEWLY DIAGNOSED

SuziNotes (aka Cliff Notes version)

How I found the path for an accurate diagnosis, appropriate treatment and my voice as a chronically ill patient.

 

ACCEPTANCE and UNDERSTANDING

  • Take a deep breath and acquire the space to think and process your situation.

  • Think about the medical symptoms and facts that led to your diagnosis

  • Who was involved? Are they adequate and competent in this NET arena?

  • Your diagnosis has given you a journey that you are obligated to take. It is not optional.

  • Obtain a definitive diagnosis via biopsy. Every specialist requires this.

  • Now is a good time to select a caregiver and your circle of support

  • This author hired apsychologist who couseled the chronically ill. It took three months, but armed with knowledge of my disease and how it realted to my life was a Godsend.

FIRST THINGS FIRST

  • Obtain a definitive diagnosis via biopsy. Every specialist requires this

  • Begin collecting your scan reports, blood work results, doctors' visit letters. If you've already had surgery, include your operating room and pathology reports.

  • If you have an urgent health crisis, fill any prescriptions that have been given you, arrange for hospitalization and/or surgery if called for.

  • If you don't have an immediate need for intervention, usually patients begin their quest for information either from current NET patients or the Internet.

THE INTERNET

  • Join ACOR.org carcinoid listserv. Dr. Eugene Woltering moderates the community. Also join Yahoo Carcinoid, Islet Cell (all pancreas NETs) and Lungnoid (if you are a pulmonary patient)

  • Download a copy of Zebra Talk (link on our home page). If you are still working with your primary care physician, give him a copy, or ask us to mail him a printed version.

  • Next stop could be www.carcinoid.org, the deepest site for information n the web. Read both parts of the "Newly Diagnosed". The Carcinoid Cancer Fundation was founded by Dr. Richard Warner in 1968; he was at the forefront of the movement to research, diagnose and treat patients. His Nets 101 video presentation is a classic and will help immeasurably in enlightening your understanding

  • A good thought I'd like to share is to acquire a mentor, preferably an old salt, like this author. We're  up-to-date, for the most part objective, and can help point you in the right direction. And, to use an absurdly ancient phrase, "we've been there".

  • If you feel up to it, or want some print outs for your physician, try www.scholar.google.com.

  • Research the experts. It's an unspoken requirement that the best way to proceed is to get a second expert opinion. Read the story on our home page "How I got my second opinion first". Choose your experts through recommendations of your physicians, or proximity, or NET patient recommendations. Or, papers writeen and their background.

  • Every specialist will require a confirmation of your disease via tumor tissue biopsy

  • every specialist will require your medical records. Best to obtain them yourself and send them rather than depending on the hospital or physician's office that generated the reports. These include scans and scan reports by the radiologist, pathology reports with diagnosis, Ki-67 (rate of proliferation), examinations, CD of your scans, bloodwork results. Keep a copy of everything for reference and trends.