So you just heard the "C" word from your doctor...        You may have heard "neuroendocrine" or maybe even the double "C" word (carcinoid cancer)...

Anyone who hears those words from their doctor knows the roller coaster of thoughts and emotions they bring...

Words like shock, devastated, blanked out, horrified, disbelief, anger, overwhelmed and denial have all been linked to a survivor's thoughts at the time they first heard a cancer diagnosis.  Most people only hear part of  what the doctor says.  One person described leaving the doctor's office and driving one block before pulling over and "losing it"...crying and screaming and beating the steering wheel until the car shook!   

If you are reading this page, you have already dealt with the first blow...that initial meeting with a doctor who had the unpleasant task to pass along the unwelcome news. 

"What do I do now?"

That is probably the question most often asked by survivors.  It is a loaded question.  It encompasses questions about health care issues, insurance issues, financial issues, employment issues, family issues, and most of all..."Am I going to die?" or "What kind of life am I going to have now?"  You have no doubt heard the saying that it takes a village to raise a child.  It also takes a village to support a cancer survivor!  

The one thing you DON'T want to do is "wait and see"!  Neuroendocrine cancer survivors can live a successful life with today's treatments and management protocols! 

So now for the good news! 

There are resources to help you and your family adjust to this change in your life.  This is not a minor change...It affects you and everyone you love and come into contact with.  Your life will never be the same as it was before your diagnosis, but you may find that in some ways it will get better!  That may seem like a strange thing to say, but some things in our lives improve after cancer raises its ugly head.  The things that improve are different for everyone.  It may be closer relationships with loved ones...a kinder, easier lifestyle...the freedom to pursue things you had been putting off...an increased awareness of the things that are important to you.  Know that the choices you make from now on will have an impact on the life you live and its quality and there is help for just about any problem you can identify.  

"Where do I start?"

Probably the first thing to recognize is that you have been diagnosed with a rare cancer.  You know that breast cancer, colorectal cancer,  prostate cancer, lung cancer and others have received much publicity and research dollars because they affect so many people.  Neuroendocrine cancers are a different duck.  They are found in a much smaller segment of the population and as such have not had as much attention as the cancers above. 

What that means to you is that there are fewer doctors practicing good treatment protocols, there are fewer research programs dealing with cures and treatments and there are fewer resources available to those that are studying or specializing in neuroendocrine cancers.   This requires that you become a partner in your care.

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  Suggested Reading for the Newly Diagnosed

  1.  The Cancer Survivor Toolbox

        Available free from  the National Coalition of Cancer Survivors.  Set of CD's and a book covering many topics to help you develop important skills to better meet and understand the challenges of your illness.  Excellent info!  Just click here to get more information and to order your copy!      

  2.   Guide to Diagnosis and Management of Neuroendocrine Tumors

             This publication is available free from      Inter Science Institute and was written by the top experts in neuroendocrine cancers.  You can choose an "online" copy or order the book free from ISI.  Order a few extras for your doctors too!  Just click here and then click on the picture of the books to preview this publication.  ISI also has the NET marker tests listed that you may need to track your disease.

   2.   The NET Community 

               This website sponsored by the NET ALLIANCE &  NOVARTIS  offers videos of nationally known doctors and patients discussing NETs.  In addition they have booklets and fact sheets to download free.  Explore this site for lots of good, easy to understand information about NETs understanding NETs, its treatments and testing protocols,  plus information on living with this rare cancer.   

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 The 5 E's of Carcinoid & Neuroendocrine Cancers

There are several activities that can cause a flare up of carcinoid syndrome symptoms and in the worst case, carcinoid crisis, and are known as the five E's of carcinoid:

1. Eating (some foods & drinks)
   
2. Exercise, trauma, anesthesia or injury
   
3. Emotions (especially stress)
   
4. Epinephrine (found in many medicines)
   
5. Ethanol (alcohol, liquor) 

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                 Take our hand...         we'll help you find your way!

Questions to Ask Your Doctor

Before receiving carcinoid treatment, the American Cancer Society recommends asking the following questions of your doctor:

• What kind of carcinoid tumor do I have?
• What is the stage of my carcinoid tumor and what does that mean to me?
• What treatment choices do I have?
• What do you recommend and why?
• Based on what you've learned about my carcinoid tumor, what is my prognosis?
• What risks or side effects are there to the treatments you suggest?
• What are the chances of recurrence of my carcinoid tumor with these treatment plans?
• What should I do to be ready for treatment?

Choose Your Doctors Carefully

Our members recommend considering carefully the following when choosing your doctor!

• Does your doctor give you an opportunity to ask questions?
• Does your doctor answer your questions completely?
• Do you feel comfortable communicating with your doctor?
• Do you feel satisfied and empowered or frustrated after talking with your doctor?
• Does your doctor have a comprehensive knowledge of neuroendocrine cancer?
• Does your doctor have other patients with neuroendocrine cancer?
• Is your doctor willing to work with a carcinoid expert in diagnosing, managing or treating your disease?
• Does your doctor express a willingness to check further for answers to questions he cannot answer?
• Is your doctor willing to learn about neuroendocrine cancer?
• Does your doctor have access to a comprehensive team of specialists to help him/her treat you?  For example:  Interventional  & Testing Radiologists, Endocrinologists, Oncology Surgeons, Hepatobiliary Surgeons, Recognized Laboratories for Neuroendocrine Tumor Markers, Medical/Hematology Oncologists, etc.
• Is your doctor willing to be a team member in a shared responsibility for your medical care with you, other doctors, your family and carcinoid experts?
• Do you feel better, more satisfied, less fearful when you finish an appointment with your doctor, or do you feel frustrated, fearful, angry or belittled?

Remember:  You are the consumer...they are the providers.  It is your body and it is your choice about what treatments you receive and what doctor provides them. 

              When in doubt...change doctors! 

The Parable of the Yellow Corvette

A man walks into the local Chevy dealer with $60,000 cash in his pocket.

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 $60,000 IN THEIR POCKET!

What should he do? The answer is obvious in this case.  He should go to another 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 oh too many docs look at it as a way to make a living and don't look at the patient's needs.   They offer "JUST WHAT THEY HAVE ON THE LOT"!

If you have a doc who will work with you and your other doctors, refer all of your local "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!

The parable of THE YELLOW CORVETTE was shared by:

Eugene Woltering, M.D.FACS

The James D. Rives Professor of Surgery and Neurosciences
Chief of Sections of Surgical Oncology and Endocrinology
Director of Surgical Research, LSUHSC
Neuroendocrine – Carcinoid Tumors      Ochsner Neuroendocrine Tumor Clinic                  200 West Esplanade, Suite 200
Kenner, LA 70065                                           Phone: (504) 464-8500   1-866-91-ZEBRA
Fax: (504) 464-8525