Patient info: 12,000 a year dx in the US – 120,000 living in the US -  ICD 9 code introduced in 2006

Many still do not know about NETs (Dr and patient community) –

Advocate – ADVOCATE – do not treat – bring awareness –

World Net Day – Nov 10, 2010 – first international day of NETs

2010 Warner Advocacy Award – Maryann Wahmann –

Facebook Page CCAN 4,600 members

What can an individual do – Ask your doctor to join NANETS – Start your own support group

Attended, volunteer and support NET Events

Net Cancer Day November 10, 2011 – CCAN will have a flag flown over the US Capital

September 20-22, 2012 National Conference in New Orleans

Dr. Tom O’Dorisio – University of Iowa

Evolution of NETs –  from Gastrin in 1905 – Zollinger-Ellison 1955- Radio Peptide Receptor 1967  - Octreotide 1980 - to Theranostics (Baum) in 2011
Heading towards surgery followed by prrt followed by imaging

Insulin – 1921-22 BantingBest – Insulin replaced in a dog

Zollinger-Ellision 1955 Gastrinoma discovery

Werner Creutzfeldt – Glucagon Peptide 1 GLP1 – Inspiration for Europe preeminence in NETs research and management

University of Iowa Mgt of Treatment Options
Tracking over 1,300 patient tracking
Algorithm of care – Scans first – Surgery - /Sando/ PRRT

Problems with NET interventions
Decisions made using gold standard CTs – but there is a lot going on with symptomatic and asymptomatic changes that are subjective .

In the US calibrations between neuropeptide plasma markers are sorely lacking between commercial – you can read the trends as long as stay with the same lab

Carcinoid Tumors Blood Markers
Serontonin (most sensitive – episodic)
5-H1AA – Almost never elevated without some type of liver mets

CgA – Use the same lab –

Validation of NKA assays in the US and Europe – must be done at ISI LAB – NKA >50 tumor is going to act more aggressively –

Pancreastatin is 100x more sensitive than CgA – very early marker for liver tumor activity

Operative Resection of Primary Tumor valuable even with liver mets

Serotonin and Pancreastatin are good makers to look for unknown primary

Theranostics – Molecular targeting of VECTORS which can be used for both therapy and diagnostics -
Target molecular imaging and therapy  -
Target  <-Vector-à Ga68 or Y90 or LU177 can go in the cage.

With a Ga68 you can quantify uptake and associated  SUV

Enormous benefit being able to use same principle for imaging and diagnostics – Theranostics