Letter to the Editor

Join in our efforts to promote Carcinoid Cancer awareness and write to your local paper. Contact me for some tips and let me know if you are published so I can post it here. The following letter to the editor (with the exception of the first paragraph that was cut by the editor) was published on April 19, 2005 in the Harrisburg Patriot-News.

"Obscure" is the term Chris Torres (If It's Tuesday, 2/12/05) might use to describe carcinoid cancer, and he would be accurate. For that reason the Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN) is working with Dr. Harold A. Harvey of Hershey Medical Center and Rep. John Perzel, to promote Carcinoid Awareness Month in May.

Carcinoid Cancer is rare – largely because it is under diagnosed. Carcinoid is a relatively slow-growing neuroendocrine cancer that is often misdiagnosed because its symptoms (flushing, wheezing, diarrhea, or abdominal pain) mimic other conditions (menopause, rosacea, irritable bowel syndrome, Crohn’s disease, reflux, or asthma).

To be cured it must be caught early and treated aggressively. Sadly, the medical community is often unaware of the major advances of the past decade in diagnosing and treating carcinoid cancer.

About 5,000 carcinoid tumors are diagnosed each year according to the Carcinoid Cancer Foundation. Dr. Irvine Modlin of Yale Institute of Medicine believes 90%
of carcinoid tumors are undiagnosed! (Dallas Morning News, March 21, 2005)

Is carcinoid cancer obscure? Maybe. But it is not as rare as many are led to believe.

PCCAN wants the next generation of carcinoid cancer patients to have an easier road with earlier diagnosis, appropriate treatment and better monitoring. We want fewer families to experience the suffering of family members and the separation from a loved one due to a premature death from carcinoid cancer.

Many cases are detected with simple blood and urine tests. Go to http://www.carcinoid.org/ for more information and contact your local support group http://www.pccan.net/ for guidance.

Teresa Lanza
Harrisburg, PA

Rep. John Perzel & Dr. Harold A. Harvey to Speak at Rally

This is a media advisory that was released today. Contact me about publishing this in your local paper.

Perzel to Speak at Rally to Promote Carcinoid Cancer Awareness Month in Pennsylvania

On May 2, 2005 at 10:00 a.m. in the Capitol Rotunda, Speaker of the House John M. Perzel and Dr. Harold A. Harvey of Penn State Milton S. Hershey Medical Center will join the Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN) in marking Pennsylvania's first Carcinoid Cancer Awareness Month.

Carcinoid is a relatively slow-growing neuroendocrine cancer that is often misdiagnosed and under diagnosed because its symptoms (flushing, wheezing, diarrhea, or abdominal pain) mimic other conditions (menopause, rosacea, irritable bowel syndrome, Crohn’s disease, reflux, or asthma).

To be cured it must be caught early and treated aggressively. Sadly, the medical community is often unaware of the major advances of the past decade in diagnosing and treating Carcinoid Cancer. For this reason PCCAN is working to promote earlier diagnosis, appropriate treatment and better monitoring of Carcinoid Cancer.

Contact Teresa Lanza of PCCAN for more information: phone 717-576-5095 or email CarcinoidSupport@juno.com.

Caregiver Support

There is now an on-line support group for those providing care or support for carcinoid cancer survivors. To subscribe go to carcinoidcaregivers-subscribe@yahoogroups.com.

For additional caregiver supports check out the information provided by NAAPNET.

The Yellow Corvette Story

This piece is posted with permission from carcinoid champion extraordinaire Eugene A. Woltering MD, FACS, of Louisiana State University Medical Center, New Orleans, LA.

A man walks into the local Chevy dealer with $60,000 in his pocket (in cash). He is strolling around the lot when a nice old guy walks up to him and asks him what he would like to buy. The potential buyer says that all of his life he wanted a new yellow Corvette. HE TELLS THE DEALER THAT HE HAS $60,000 IN HIS POCKET AND IS READY TO BUY THE NEW CORVETTE TODAY.

The old guy says that he will sell him a red, blue, green, silver, black, or gold corvette but that he will not sell him a yellow corvette--BECAUSE HE DOESN'T HAVE ONE IN STOCK AND WON'T ORDER ANYONE A NEW YELLOW CORVETTE--EVEN IF THEY HAVE 60K IN THEIR POCKET.

What should the customer do? The answer is obvious in this case--- he should go to another Chevy dealer.

What is not obvious is the moral of this story:

If you are being treated by a doctor who is not knowledgeable about this disease (and doesn't want to get educated on the disease) or will not work with you and a carcinoid expert to get you the best care available--YOU NEED A NEW DOCTOR.

MEDICINE IS A LIFE SAVING ART BUT OOOOOH TOO MANY DOCS LOOK AT IT AS A WAY TO MAKE A LIVING AND DON'T LOOK AT THE PATIENT'S NEEDS ---"JUST WHAT THEY HAVE ON THE LOT"---

IF YOU HAVE A DOC WHO WILL WORK WITH YOU-- REFER ALL OF YOUR LOCAL COMMUNITY NOIDS TO HIM --PRONTO--HE IS A KEEPER. BUT IF YOUR DOC GIVES YOU THE "ATTITUDE"--YOU NEED A NEW DOC-PERIOD—END OF DISCUSSION--YOU ARE FAR MORE VALUABLE THAN ANY CAR.

NOW YOU HAVE HEARD THE YELLOW CORVETTE STORY