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 and other neuroendocrine tumor (NET) patients. |
||
What is Carcinoid? |
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. Read our brochure |
|
| How is it diagnosed? |
People
with carcinoid are often misdiagnosed as having 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 combined (multi-disciplinary) approach is best - surgery, radiological intervention, biotherapies, clinical trials, chemotherapy, targeted therapies, and anti-tumor and anti-angiogenic agents are some of 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 will help fund valuable ongoing research to find a cure. |
In the medical community, 
the term "zebra" is universally understood as a reference to an orphan, or rare disease or condition, Carcinoid and other NETs being one of them. Physicians are taught the core tenet of medical diagnosis - to assume that the simplest explanation is usually the best, i.e., it is generally more productive to look for common rather than exotic causes for disease, hence the phrase
"If you hear hoofbeats,think horses, not zebras."
Hence, the zebra is the icon for carcinoid and all rare cancers.
the term "zebra" is universally understood as a reference to an orphan, or rare disease or condition, Carcinoid and other NETs being one of them. Physicians are taught the core tenet of medical diagnosis - to assume that the simplest explanation is usually the best, i.e., it is generally more productive to look for common rather than exotic causes for disease, hence the phrase
"If you hear hoofbeats,think horses, not zebras."
Hence, the zebra is the icon for carcinoid and all rare cancers.
The Carcinoid Cancer Foundation receives 10% of the sales of Monica's Bracelet towards its mission of research and awareness to find a cure for Carcinoid. Click here to learn more.
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.
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 our friend Deb Kilmartin.
