Carcinoid Information
 
On May 7, 2006, Sarah had emergency stomach surgery due to extreme abdominal pain.  During that surgery, it was discovered that Sarah had stomach cancer, which had also spread to her liver.

In surgery, the diagnosis was adenocarcinoma, however the pathology department found it was a carcinoid tumor.

Her treatment consisted of injections of Sandostatin LAR every 4 weeks for 1.5 years, currently going with an injection every 3 weeks.  Also do complete medical exams and CT scans every three months.  The literature suggests CT scans every 6 months when stable, but we're happy to do more frequently than that as her liver tumors are shrinking.

She is having surgery on June 26, 2008, to debulk her liver, remove her gall-bladder, and 'snoop'.

We are providing updates to family and friends via Jason's "blog", which is linked at the bottom left of becking.com.  You can also find those specific entries here.

Following are some websites and articles we have found helpful thus far.
 
Carcinoid Site of NETumoradvisor.com Great site with current information only (it seems), including medical definitions.
   
Carcinoid.org The Carcinoid Cancer Foundation, Inc.
Lots of information, from newly diagnosed basics to specific treatment options.
   
Caringforcarcinoid.org New England group focused on research for curing carcinoid. "The Caring for Carcinoid Foundation believes the future is very bright."
   
Mt. Sinai Conference Videos Links to Videos from April 2, 2006, carcinoid conference at Mt. Sinai Hospital.  Dr. Richard Warner (Mt. Sinai) and Dr. James Yao (MD Anderson)
   
June 2005 Annals of Surgery Article Surgical Treatment of Advanced-Stage Carcinoid Tumors, by J Phillip Boudreaux, MD, et. al.
   
Video FAQ section from netumoradvisor.com Great videos from LSU physicians (surgeons and radiology) and patients.  A very good synopsis of what's what for all interested partied.
   
2006 Carcinoid/NET Conference Great videos and presentations from the 2006 Carcinoid/NET Conference in Portland, Oregon.
     
2007 Carcinoid/NETS Conference Videos and presentations from the 2007 Carcinoid/NETS Conference in Norfolk, Virginia.
    
Good Informative "Basic" articles
NCI Carcinoid Patient information National Cancer Institute's Patient Information about Gastrointestinal Carcinoid
   
NCI Carcinoid Physician information National Cancer Institute's Physician  Information about Gastrointestinal Carcinoid
   
Carcinoid Article from Endotext.org August 2, 2004, article detailing carcinoid tumors.
   
A Review of Carcinoid A Review of Carcinoid Cancer, by Dr. Richard Warner
   
Consensus report (in .pdf format) A great all-in-one-place article by Drs. Oberg, Kvols, et al. discussing diagnosis and treatment options.  From Annals of Oncology
   
Management of neuroendocrine tumours
(in .pdf format)		 A great supplement to the article above.
     
ISI Guide to Diagnosis & Management Handbook for physician reference, including insurance codes for billing purposes, on diagnosis and management of Neuroendocrine Tumors.
Zebras and Sunflowers
Zebras from carcinoid-tx.org:
"When medical students are going through their training they inevitably hear the phrase:   “When you hear hoof beats, think horses, not zebras.”

Basically this helps to illustrate the strategy of initially diagnosing the more usual diseases or problems when a patient presents with symptoms.   An all-too-common scenario for many patients with Carcinoid, however,  is one where a proper diagnoses is not made for a period of time . . . very often those with Carcinoid Syndrome are diagnosed with IBS  or Crohn’s Disease before finally the correct diagnoses is made.

Some of our expert physicians have been heard to state therefore that in the case of Carcinoid, the patients ARE the Zebras . . . the more unusual . . . and NOT the horses! "
   
Sunflowers from CaringforCarcinoid.org:
"Our logo is the sunflower because it reflects the mission of the Caring for Carcinoid Foundation.
  • The sunflower symbolizes constancy as it turns to follow the sun.
  • The sunflower symbolizes power, warmth, and nourishment.
  • The sunflower symbolizes longevity.

The Caring for Carcinoid Foundation is only one foundation, but comprises many individuals who dedicate themselves to discovering a cure for carcinoid.  Together, these efforts are constant, they provide power, warmth, and nourishment, and they will help all carcinoid patients realize their hopes of longevity rather than being at the mercy of this cancer.

The Caring for Carcinoid Foundation believes the future is very bright."