Delaware Valley Carcinoid & NET Connection
Serving Philadelphia, surrounding counties, Southern New Jersey, & Delaware

Promoting Awareness and Advocacy

THE PHILLY CONNECTION

A bridge to resources, support, education and the medical community for carcinoid & other neuroendocrine tumor (NET) patients. 

       

What are carcinoid and neuroendocrine tumors?                                 This rare cancer is a usually slow-growing neuroendocrine tumor that can produce hormones causing misleading symptoms such as flushing, wheezing, diarrhea, or abdominal pain which can create incorrect and delayed diagnoses. Read our brochure.


How is it diagnosed?
Some of the diseases people with carcinoid are often misdiagnosed as having are menopause, rosacea, irritable bowel syndrome, Crohn's disease, acid reflux, or asthma. Often, a combination of a few simple blood and urine tests can accurately diagnose the disease, e.g., the 5-HIAA 24 hour urine test and the chromogranin-A blood test.

How is this cancer treated?
There are a number of treatments available to patients and research into new drugs is ongoing. No one treatment regimen can manage all patients at all stages of the disease. Experts in the field agree that a surgery, radiological intervention, biotherapies. clinical trials, chemotherapy, targeted therapies, and anti-tumor and anti-angiogenic agents are some of the treatment options.

Is there a cure?
Carcinoid can be cured if caught very early with surgical removal of the tumor, but most times it is diagnosed much later in the disease process. Your donations and grants from corporations and government agencies help fund valuable ongoing research to find a cure.



               The Carcinoid Cancer Foundation receives a percentage of the sales of Monica's Bracelet towards its mission of research and  awareness to find a cure for Carcinoid. The bracelet honors Monica Warner, a true Renaissance woman and a driving force behind the Carcinoid Cancer Foundation for more than two decades. Click here to learn more.



           Click here for link to video of 2009 National Carcinoid/NET Patient Conference 
The 2009 Conference was held in New Orleans Louisiana and hosted by Dr. Eugene Woltering and the Neuroendocrine Tumor Clinic at Ochsner Healthcare in Kenner and Louisiana State University.   

SAVE THE DATE! NOVEMBER 10, 2010                                               
FIRST ANNUAL NET CANCER AWARENESS DAY

EXHIBIT PLANNED IN THE LOBBY OF THE ABRAMSON CANCER CENTER AT UNIVERSITY OF PENNSYLVANIA HOSPITAL

9 - 5pm Come visit us.
Wear something zebra-striped.
The Yellow Corvette Parable

Thanks to Dr. Eugene Woltering, Neuroendocrine Tumor Clinic, Louisiana State University, Ochsner Medical Center, Kenner LA.

A woman walked into the local Chevrolet dealer with $60,000 cash in her purse. She is strolling around the lot when a salesman walks up to her and asks her what she is interested in buying. She says all her life she's wanted a yellow Corvette and she has the cash with her and is ready to buy this very moment. The salesman says he will sell her a blue, black, silver, green or gold one but he will not sell her a yellow Corvette - BECAUSE HE DOESN"T HAVE ONE IN STOCK and won't order anyone a yellow Corvette - EVEN IF THEY HAVE THE MONEY.

What should she do? SHE SHOULD GO TO ANOTHER CHEVY DEALER!

The moral of the story?

If you are being treated by a doctor who is not knowledgeable about carcinoid and other neuroendocrine tumors, doesn't want to become educated about the disease, or will not work with you and an expert to get you the best care available ... you need a new doctor!

If you have found a doctor who will work with you, do share him with others in your community.
     This site is dedicated to the memory of our friend Deb Kilmartin.

CNETS of Canada has posted videos from their 2009 conferences.  Here is the link:
 http://itr8.com/hosted/cnets/winnipeg09/presentation_links.htm

Click here to read the new newsletter The Practical Patient dedicated to empowering and educating the patient.
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