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.
The Delaware Valley Carcinoid/NETs Connection was the recipient of a Sunflower Grant from The Caring for Carcinoid Foundation. The grant funded our new brochure, some posters and flyers for the table exhibit at University of Pennsylvania's Abramson Cancer Center (Perelman lobby) on November 10, 2011 in celebration of the 2nd Annual Worldwide NET Cancer Awareness Day.
CLICK HERE FOR PICTURES OF OUR EXHIBIT AT ABRAMSON CANCER CENTER AT THE UNIVERSITY OF PENNSYLVANIA
The Caring for Carcinoid Foundation (CFCF) is the most focused and deliberate not-for-profit funder of carcinoid and pancreatic neuroendocrine cancer research. Founded by metastatic neuroendocrine cancer patient Nancy Lindholm, CFCF is dedicated to discovering cures for patients with carcinoid, pancreatic neuroendocrine, and related neuroendocrine cancers. Along with its focus on research, CFCF is committed to supporting patients, families, friends, and caregivers by providing them with complete and up-to-date information. Since 2009, CFCF’s patient education events have served over 1,000 patients and caregivers. Videos of these programs are available online at: http://www.caringforcarcinoid.org/videos?page=1What 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. 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.
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The Carcinoid Cancer Foundation receives a percentage of the sales of Monica's Bracelet towards its mission of research and awareness and 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 Click Here for Tentative Agenda
2012 National Conference - BOOK NOW!!
Dr. Eugene A. Woltering, the Carcinoid Cancer Awareness Network (CCAN), and the New Orleans Neuroendocrine Tumor Specialist Team at Ochsner Medical Center – Kenner, Louisiana, and Louisiana State University have announced the dates for the 2012 National Carcinoid/NETs Conference.
The conference will be held from Thursday, September 20 to Saturday, September 22, 2012 at the Astor Crowne Plaza in the heart of New Orleans’ French Quarter.
The conference will begin with its traditional social event featuring Dr. Woltering leading everyone in a “second line.” On Friday and Saturday lectures will begin at 8:00 am and conclude at 5:00 pm, with break times throughout the conference. Lunch will also be served. It is anticipated that the room cost will be $149.00 per night. Registration fees will be announced at a later date.
Dr. Woltering invites you to contact him regarding speaker/conference suggestions and to share feedback about what you “liked and disliked at the last conference.” Please write to Dr. Woltering at ewolte@lsuhsc.edu.
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 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.
