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Carcinoid A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

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  Updated: 27 April 2017


27 April 2017 this web site was 20 years old, the 1st by a Carcinoid patient!


There is HOPE for those diagnosed with Carcinoid/NETS. 

I've started my 23rd year of active, full life: May 10, 1995 -- May 10, 2017.

April 27, 2017 was the 20th anniversary of this page;
 the FIRST by a Carcinoid patient.


April 23, 2014 I began Dialysis every evening at home
due to being Stage 5 Chronic Kidney Disease.

My memoir book Becoming Sunny Susan is now available
softcover and ebook!  By Susan L. Anderson           

NEW -  
Click on http://www.youtube.com/watch?v=sBZnPOGHf-8

to view the 90 second book trailer video from YouTube!

My story is one many of you can identify with – an uplifting look at a life that I am determined to live well, despite all the obstacles I have been dealt. At the heart of the story is the idea of LIVING with cancer. It took eight years to correctly diagnose my rare disease, Carcinoid/ Neuroendocrine Tumors. Then, they said I would die in just a few more years. That was 18 years ago, and here I am! How have I faired? Very well. Read the book to find out how I have lived a happy life, even with cancer.

Would you help to spread the positive word by telling your friends, by gifting the book, and by posting a review for other readers on the www.amazon.com  page? We know how valuable a positive recommendation can be.

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Carcinoid Cancer Foundation Releases New Video Series
Beginning with “The ABC’s of Carcinoid/NETs”

What is the most common kind of neuroendocrine tumor (NET)?  How do these tumors grow?  What is carcinoid syndrome?  What are the quality of life issues for patients?  In “The ABC’s of Carcinoid/NETs,” three of the world’s leading carcinoid and NET cancer specialists – Dr. Richard R.P. Warner, Dr. Edward M. Wolin, and Dr. Eugene A. Woltering  – talk about the advice they offer their patients, the advances they have seen during their careers, and what they anticipate will be available for NET patients in the future.  http://www.youtube.com/watch?v=9U6q78a1xaQ

If you or a loved one were newly diagnosed with carcinoid cancer or another neuroendocrine tumor, such as a pancreatic neuroendocrine tumor (pNET), what would you want to know about these rare diseases?  What information would you like to share with your local doctor?  Learn more in the first video of a new series presented by the Carcinoid Cancer Foundation.

In recognition of the 3rd Annual Worldwide NET Cancer Awareness Day on November 10, the Carcinoid Cancer Foundation released the second video, "Faces of Hope," in its 2012 series. Meet NET cancer survivors Claire, Josh, Judy, Kathy, Kenneth, and "Sunny" Susan as they share their journeys about being diagnosed and living with rare neuroendocrine tumors, including lung carcinoid, carcinoid of the ileum, and pancreatic neuroendocrine tumors.  Future videos in the series will focus on surgery and treatment options, lung carcinoid, and nutrition. (Click on the YouTube logo below to see the video in a larger format.)
      "If you don't suspect it, you can't detect it."

3rd Video is about LUNG Carcinoid/NETs. http://youtu.be/_nOtls5R_Yc

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Additional video that are not part of this series but are available on YouTube.
http://www.youtube.com/user/CarcinoidNETs.  Two are listed below but there are others, be sure
they are from the Carcinoid Cancer Foundation  (CCF) for good medical information

Surgery and Treatment Options for NET Cancers

What are the surgical and treatment options for carcinoid and neuroendocrine tumor patients?  For patients with tumors that have spread to the liver which therapies should be used to improve quality and quantity of life?  How do patients benefit from clinical trials?  There is an explosion of technologies coming not only in the diagnostics but also in the treatments of these rare cancers.  View the latest video from the Carcinoid Cancer Foundation: http://bit.ly/VcJXgz  http://www.youtube.com/watch?v=ZQhysl6g_6E

"Surgery for Neuroendocrine Tumors: What Every Patient Should Know" -- Carcinoid/NET specialist Dr. Rodney Pommier, Professor of Surgery, Division of Surgical Oncology, Oregon Health & Science University, is featured in this video, made possible through a collaborative effort of the New Jersey Carcinoid Cancer Network and the Carcinoid Cancer Foundation.  http://www.youtube.com/watch?v=wsahfdsJwFA

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Many of these are NEW links although same topic!
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  Worldwide NET Cancer Awareness Day November 10, 2013

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Mildred “Millie” Kowalski, of Novartis Oncology announced at the Carcinoid Conference, in New Orleans, 9/22/2012 that I, Susan Anderson, am the recipient of the 2012 Warner Advocacy Award. I was sorry that we were unable to attend.  I am honored and thrilled to receive this very meaningful award!  Dr. Richard R. W. Warner, at my request, accepted this award on my behalf.

Recognizing the need for greater patient support, Susan created the first website about NETs by a patient, which celebrates its 15th anniversary this year. The site, carcinoidinfo.info, continues its success in assisting people affected by the disease, and has more than 380,000 visitors. In addition to this "labor of love," Susan has dedicated her time to personally answering more than 100,000 e-mails, assisting patients and caregivers from around the world. Susan's in-depth relationships within the carcinoid/NET community even allow her to refer international patients to support groups in their respective countries.

Susan has attended numerous conferences throughout the world as a guest speaker, including the first International Meeting of Patient Self-Help Groups in Berlin, Germany. One of her fondest memories is from 2009, when Dr. Richard Warner invited Susan to take part in a 12-person panel of patients with carcinoid cancer at the Patient Support Advisory Board meeting in New York. When not attending conferences, Susan participates in many boards and support groups, some of which she has founded.

"Sunny" Susan has her nickname for a reason. Each step of her journey has been accompanied by unwavering optimism, determined energy, and an incredible zest for life. It makes sense that her daily goals are to "have some good 'belly laughs,' assist others, and live each day to its fullest enjoying each and every one."

Susan is honored to share recognition alongside the late Monica Warner, the pioneer of Patient Advocacy for NET patients who was also a dear friend. The recognition also extends to amazing patient advocates everywhere, including Maryann Wahmann and Jan Naritomi-Hart, the 2010 and 2011 Warner Advocacy Award recipients, respectively.

Please visit the Warner Advocacy Award Guest Book and leave a message congratulating our 2012 winner.


Novartis Patient Advocacy

Novartis Oncology Affairs and Patient Advocacy provide support to patients through an array of programs and services


The NET Alliance

The NET Alliance is a Novartis Oncology initiative to help improve outcomes for patients with NETs



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Sunny Susan Anderson is one of three featured in the Carcinoid Cancer Foundation, Inc.'s
annual fund raising appeal (November 2010), part of which is below. 


Dear CCF Supporter and Friend,

We are your mother, your father, your sister, your brother, your neighbor. We are you. As many of us already know, carcinoid cancer is life-changing. Its symptoms are often difficult to distinguish from those of many more common illnesses, at least until the cancer more fully develops. Then the disease has a profoundly terrible impact on us and our families

These tumors can be successfully treated if they are diagnosed and treated properly. With the proper care, we can return to a normal lifestyle However, a diagnosis requires a trained specialist. On average, five years pass between the first symptoms and correct diagnosis and the start of appropriate medical care. These are five critical years. During this time, the disease progresses, the symptoms intensify, pain worsens, and our prognosis becomes less positive. This does not have to be the case. We are living testaments to the benefits of an accurate diagnosis, medical treatment, and the support of others who have been challenged by these tumors.

Fortunately there is one organization that is doing so much to change the statistics and to provide patients with access to valuable information and education -- The Carcinoid Cancer Foundation (CCF). It is, in part, because of CCF that we are now living more fulfilled lives, with hope and an eye toward the future. That’s why we are now turning to you to request your help in extending the support of CCF to thousands of others across the nation.

CCF is the recognized leader in educating patients, providing them with the needed information that makes it possible for people like us to recognize our symptoms, learn what to ask our doctors, and be proactive in securing treatment. Today, as survivors who have thrived, we owe much to CCF for its support and we now feel it’s our time to repay CCF by supporting this fund raising initiative.

There is much more to be done and CCF needs your help.

Enclosed is a fact sheet which highlights some of the work and accomplishments of CCF. As you read this, we are asking that you remember the human and personal element. CCF’s work and commitment has made a great difference in our lives. The Foundation will continue to benefit thousands of others just like us.

We need you to make a gift to CCF that is financially and personally meaningful. Through your generous support, you will be providing the gift of life to those with carcinoid and neuroendocrine tumors. This is truly a gift that will continue to give hope to us, to your neighbors, your friends, and your family. Thank you for your most thoughtful consideration. We send you our best wishes for a joyous Holiday Season and a bright New Year.


"Sunny Susan" Anderson

Tax-deductible contributions to the Carcinoid Cancer Foundation can be made by check (mail to The Carcinoid Cancer Foundation, 333 Mamaroneck Avenue #492, White Plains, NY 10605), online at http://www.carcinoid.org, or by phone (using Visa, MasterCard or American Express) at 888-722-3132.

My bio with the fund raising letter:

"Sunny Susan" Anderson – age 72

Many people who have contacted me, after finding my website, www.carcinoidinfo.info, have told me their story is similar to mine. We started searching for the cause of my "gastrointestinal pain," "ulcers," "gallbladder" and other problems when I was 49 years old in 1987. I was very active within the Arizona community. One of the local doctors told me I was paranoid following my gallbladder surgery and it was all in my head. I lost 62 pounds during the last six months of my search for answers.

After an eight-year search, when I had surgery in May 1995, I was diagnosed with carcinoid cancer in my ileum and lymph nodes which had spread to my liver. I immediately did research on the Internet. All I found then was the old and outdated "wait and see" approach and you’ll be dead within three to five years. I refused to accept this! After surgery I felt better, regained the weight I had lost, but still had pain. I was told to "learn to live with it."

Finding the Carcinoid Cancer Foundation (CCF) in 1996 was a ray of sunshine, good medical information and hope for the future. I learned I did not have to live with constant pain. My search for answers began in 1987 and did not really end until 1997 when I consulted with the Medical Director of CCF, one of the world’s leading experts on carcinoid, Richard R.P. Warner, MD, who turned my life around and gave me back my good quality of life. Dr. Warner’s treatment, along with my second surgery in October 1999, has me stable.

Today I do routine blood tests, CT’s, MRI’s, and scans as deemed necessary to monitor my excellent quality of life. Daily I count my blessings, give thanks for those blessings and the Carcinoid Cancer Foundation. As my wonderful husband, Howard, says, "Each day is a gift." CCF and Dr. Warner were my lifesavers and are my heroes!

Carcinoid & NET (neuroendocrine tumors) Cancer Fact Sheet

1. These orphan diseases (defined as occurring in less than 200,000 people) are currently diagnosed in approximately 5.4 of every 100,000 people in the United States population.  

2. Over 90% of all carcinoid/NETs are initially incorrectly diagnosed and treated for the wrong disease.  

3. The average duration from the onset of symptoms to proper diagnosis exceeds five years.  

4. There are approximately 110,000 people living with carcinoid/NETs in the United States.  

5. There are less than 100 carcinoid/NETs specialists in the U.S.  

6. Many physicians are misinformed about carcinoid and neuroendocrine tumors, and believe that these cancers are benign, slow growing and don’t metastasize (spread).  

7. Irritable Bowel Syndrome (IBS) and Crohn’s disease are the two most common misdiagnosed conditions for patients with midgut carcinoid.  

8. Abdominal pain, flushing, diarrhea, wheezing, bloating, heart palpitation, weakness, skin rashes, heartburn and weight changes are the most prevalent symptoms of carcinoid & neuroendocrine tumors.  

9. The average age of the current carcinoid/NETs specialist in the U.S. exceeds 60 years old and there are few younger physicians entering this specialty.

Facts about the Carcinoid Cancer Foundation (CCF)

1. The Carcinoid Cancer Foundation was founded over 40 years ago in 1968.  

2. CCF was originally founded to support Dr. Richard R.P. Warner’s research at the Serotonin Laboratory at Mt. Sinai in New York City after the completion of a research grant from the National Institutes of Health (NIH).  

3. Dr. Warner, the Carcinoid Cancer Foundation’s Medical Director, is recognized as one of the leading carcinoid/NETs specialists in the world.  

4. The mission of the Carcinoid Cancer Foundation is awareness, education, advocacy, and the support of research for carcinoid and NET cancers, all with the ultimate goal of finding a cure for these rare diseases. The mission can be summed up with this positive image: REACH – Research, Education, and Awareness with Compassion and Hope.  

5. The Carcinoid Cancer Foundation’s website is, perhaps, the most visited carcinoid/NETs related website in the world, with over 1 million visitors during the past 10 years.  

6. CCF serves thousands of patients, caregivers, family members, friends, and members of the public and the medical community annually with a toll-free education and support telephone line and by answering e-mails addressed to the Foundation.  

7. CCF has been instrumental in the formation of nearly all (over 40) support groups for carcinoid/NETs patients throughout the United States.  

8. CCF played a major role in the creation of NANETS (North American Neuroendocrine Tumor Society), which is the medical practitioner counterpart to the Carcinoid Cancer Foundation.  

9. The Carcinoid Cancer Foundation is represented on the Steering Committee for Worldwide NET Cancer Awareness Day, an annual global campaign to bring about greater awareness of NET cancers.

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 2nd Worldwide NET Cancer Awareness Day November 10, 2011

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 - Videos -

Video Recordings and Lecture Transcripts of Local and National
Patient Carcinoid/NET Conferences
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It is with great sadness that I share the following information with you. 
Monica and I became friends, via the telephone and email, in 1996,
and met for the first time in NYC in 1998. 
We just clicked and I always felt like she was the sister that I never had. 
I echo the words of Maryann Wahmann below.
In lieu of flowers,
it was Mrs. Warner’s wish to enable the continuation of the many activities
 of The Carcinoid Cancer Foundation and donations can be made in her memory
(please see below).  Susan Anderson

It is with a very heavy heart that I have to pass the news to you! Monica Warner was an amazing women and our number one advocate for everyone in the NET community around the world . She will be missed by all.  Please keep  Monica, Dr Warner and their family in you thoughts and prayers. Maryann



May 16, 1937August 7, 2009


It is with profound sorrow that The Carcinoid Cancer Foundation Board of Directors and staff announce the death of Monica Warner, a driving force behind the foundation for over 20 years.  Mrs. Warner died unexpectedly on Friday, August 7, 2009. We extend our deepest sympathy to Richard R.P. Warner, M.D., and his family on the passing of his beloved wife, Monica.


Since 1987 Mrs. Warner served as CCF’s Director of Development and Research Coordinator.  She was instrumental in helping bring about the carcinoid cancer/neuroendocrine tumor support groups throughout the United States and was extremely proud to see the number of support groups grow from the first support group in 1996 to over 40 groups today.


Mrs. Warner was also solely responsible for The Carcinoid Cancer Foundation’s outstanding website.  She created the site in 1996 and it grew under her leadership to serving individuals from 119 countries worldwide.  Nearly 1,000,000 people have visited the CCF website since its inception.


In addition to her work with the foundation, Mrs. Warner was a registered dietitian, certified dietitian-nutritionist, and certified diabetes educator, with a Master of Science degree in Nutrition and Public Health from Columbia University in New York City and a Bachelor of Science degree in Food and Nutrition from Teachers College in Stockholm, Sweden.  She had a private nutrition practice; worked at St. Agnes Hospital in White Plains from 1982 to 1987, where she was the Nutrition Education Coordinator; and served as an adjunct professor in nutrition at Westchester Community College.  Earlier in her career she was a nutritionist for the Dairy Council of Metropolitan New York, a research nutritionist at Albert Einstein College of Medicine in the Bronx, and a clinical dietitian for the Swedish Consul General in New York City.


A  Renaissance woman, Mrs. Warner had a wide variety of interests ranging from speaking four languages to a passion for both photography and flying.  She earned her private pilot’s license in 1988 and flew several types of planes, including a stunt plane.  Last summer, she participated in a National Geographic photography program in France, where her photographs were selected as among the best by trip participants.  Her photographs have long been seen on the Carcinoid Cancer Foundation website, particularly from conferences throughout the United States and in Europe.


Mrs. Warner is survived by her husband Richard R.P. Warner, M.D., Professor of Medicine at The Mt. Sinai School of Medicine in New York and Medical Director of The Carcinoid Cancer Foundation; daughter Nancy Coste, her husband and their two children of Brussels, Belgium; son Charles Falker, his wife and their two children of New Rochelle, New York;  Dr. Warner’s four children, Dr. Jon J.P. Warner, his wife and their four children of Weston, Massachusetts; Keith R.P. Warner and his daughter of Denver, Colorado; Douglas C.P. Warner, his wife and two children of Portland, Oregon; Lynn S. Unipan, her husband and their two children of Ambler, Pennsylvania; and  longtime household member Elisabeth Herche.  Mrs. Warner also has many brothers and sisters and extended family living in Sweden.


In lieu of flowers, it was Mrs. Warner’s wish to enable the continuation of the many activities of The Carcinoid Cancer Foundation and  donations can be made in her memory to The Carcinoid Cancer Foundation, 333 Mamaroneck Avenue, # 492, White Plains, NY  10605 or online at http://www.carcinoid.org (click on the Donate Now button on the home page) with a Visa, MasterCard or American Express, or by calling 888-722-3132, Tuesday through Thursday, 10 am to 4 pm, Eastern Standard Time.  Services for Mrs. Warner will be held privately.

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Posted in behalf of E A Woltering, MD, July 2, 2009:


      Recently I met with Susan McMillian from the Patrick F. Taylor Hope Lodge (ACS) here in New Orleans. As you know the Hope Lodge has
provided a home away from home for many of our patients being cared for here in New Orleans. What I didn’t realize is the scope of the
care that they have provided over the last three years since we opened our doors in the New Orleans area.

      To date they have provided shelter to over 200 of our patients. The total number of night-stays provided for 2007 was 52. In 2008 they
supplied 639 room/nights for our patients. I have to tell you that I  gasped out loud when Susan told me that the Hope Lodge had provided
991 room/nights for our patients so far in 2009. If you consider that the average hotel room in the New Orleans area costs $90 per day this
is almost $90,000 worth of free rooms for 2009 and over $150,000 for the three years they have been supporting our patients who travel to
New Orleans for their care.

     As everyone knows the economy in the USA is significantly depressed and many of our patients can’t afford to travel long distances for
medical care and to put their family up in a hotel while they recover from their surgery or other treatments.

     I am personally asking for your support for the Patrick F Taylor Hope Lodge in New Orleans----even if you have never used this facility. If
facilities like this close, the overall care of NETS patients will be impacted in an extremely negative fashion. As it currently stands - over 30%
of the total care provided by our local Hope Lodge goes to NETS folks. Would you please consider even a small gift to help support this group?

    I thank you in advance for your donation. If you can’t donate money maybe you can send Susan and her staff a note telling them how
much you appreciate the care and compassion that they show our fellow NETS patients.

    I hope all of you have a great 4th of July and stay safe. Thanks in advance for your support of the Patrick F. Taylor Hope Lodge. 

Please make all donations out to:

The Patrick F. Taylor Hope Lodge HOMECOMING 2009
2609 River Road
New Orleans La 70121


Thanks in advance for your help and support,

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Personal survival (winner) stories, Websites & blogs

Many personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors --survivor stories  -- medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. These websites range from personal and support group sites both national and international.

United States

  • "My Carcinoid Story" by Susan Anderson
    La Grande Dame de Carcinoid
    This is the first and oldest online personal website created in 1997. Susan is a carcinoid patient and awareness advocate way beyond that time. Her website has a wealth of information and should be one of the first personal websites you should visit. She is a longtime Carcinoid and Breast Cancer survivor with an aggressive approach to maintaining an active and lifestyle.
    "I was diagnosed with Infiltrative Ductal Carcinoma (IDC) Breast Cancer on June 18, 1999. There is NO connection to Carcinoid, this is completely different! I had a lumpectomy, and did 33 sessions of radiation, but no chemo. I went for mammogram every 6 months for 5 years and now go each year. All is well. Getting those mammograms is very important, do it gals! More on my web site www.carcinoidinfo.info  I am a 10 year survivor, but I do not like the word survivor, how about winner!"
    "Lead a full and active life while LIVING with Cancer" is her motto. - You will find many additional personal web-pages on her site as well as information and links to medical/drug databases, support groups, humor, books, music, prayer lists, travel, political issues, AZ info, cowboy poetry, and much more!

    READ MORE on Susan's Blog http://www.azcentral.com/members/Blog/sunnysusan/50634?&wired

What Monica Warner had on the web site … she added “winner” in May 2009.

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About the Carcinoid Cancer Foundation (CCF)Foundation
Our Mission:
REACH for a CureResearch, Education, Awareness, Compassion, Hope 






The first and oldest carcinoid cancer/neuroendocrine tumor (NET)

Foundation in the US, Founded in 1968

Celebrating More Than 40 years of service to the
carcinoid/NET community

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 The most recent lecture Dr. W has given was of the  Video recordings
 from The Carcinoid Cancer Awareness (CCAN)
3rd annual patient conference November 11, 2007,
is now available online.
 Access and view them from their website.


 A Webinar with Dr. Richard R. P. Warner, MD
" Carcinoid & NET'S : An Overview of Current Management in The United States"
To view this webinar
go to
Click on replay webinar page (link on left side of page)
Dr. Richard R. P. Warner, M.D. is
Medical Director of the Carcinoid Cancer Foundation.
Professor of Medicine, at The Mount Sinai Hospital and School of Medicine
with his focus of activity entirely devoted to clinical practice,
teaching and development of a Center for Carcinoid and related 
Neuroendocrine Tumors, at The Mount Sinai Hospital and School of Medicine
 Email: carcinoidaware@aol.com)

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Susan Anderson speaks in Northern Calif. Sept 20, 2008

  NorCal CarciNet Support Group

Date:  Saturday, Sept. 20, 2008
Time:  1 pm - 4 pm
Place:  The Wellness Community
3276 McNutt Ave, Walnut Creek, CA 94597
Phone (925) 933-0107

 Susan is known throughout the Carcinoid/Neuroendocrine community as a true fighter for carcinoid/NET awareness and of giving selfless hours helping others who battle this disease.

 Susan Anderson an advocate for Carcinoid and Neuroendocrine Cancer Awareness

 Susan Anderson is a patient with Carcinoid, diagnosed in 1995. She has achieved much for the NET community since her diagnosis. In 1997 Susan created and placed the very first patient maintained web site about Carcinoid on the internet.  Susan use to answer every email personally but with over 271,360 hits she no longer can do that, but does respond to many. 

Susan attended the first Carcinoid Conference in Sarasota, Florida and since has attended and often spoke at most all future conferences for Carcinoid. She was on the board of directors for the Southern California Carcinoid Fighters Support Group and assisted in putting together the first California conference in Santa Ana. 

Her talk will be full of useful information for patients
dealing with carcinoid, as well as breast cancer of
which she also is a survivor.

For more information please contact;
Jeanette at (530) 822-5422 or cancerfighter@sbcglobal.net

NorCal CarciNet Support Group  

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The RUN FOR HOPE 5K has brought  Carcinoid Cancer to the front lines of the battle against cancer. 
This year the month of July has been designated as “Carcinoid Awareness Month” in the State of Colorado by Governor Ritter. 
This year the month of July has been designated as “Carcinoid Awareness Month”  in the City of Fort Collins and
 this year the  “Lee Curtis Memorial Run for Hope 5k” will be more important than  any other year. 

 July 26th 2008 – City Park  Sign up on line  - active.com
 the Foot of the Rockies or Runner’s Roost in Fort Collins, and  www.runforhope.net

 Forever grateful
Jeanne Lambert
Coordinator of Run for Hope

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 Carcinoid Cancer Foundation, Inc. (CCF)

CCF 11th Annual Carcinoid/NET's Conference
For patients, caretakers and medical professionals
"Progress in Research and Treatment" (poster)
April 13, 2008

Mount Sinai Hospital New York, NY
Guest Speakers:
Herbert Chen, M.D., University of Wisconsin Paul P. Carbone
Comprehensive Cancer Center
Madison, Wisconsin
Andrew S. Kennedy, M.D., Wake Radiology Oncology
Cary, NC;
d. Networking and survivor stories
For more information click on the following links:

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 Carcinoid Conference in Harrisburg, PA!

Diagnosis and Treatment of Carcinoid Cancer:  What We Need to Know.

Saturday, April 26, 2008, 9am - 4pm in Harrisburg, PA. 

Featured speakers:  
Dr. Matthew Kulke, Dr. Thomas O'Dorisio
and Judy Lyter, RN, MS, LPC  
Dr. Harold Harvey, moderator

Details, including the agenda, can be viewed at the PCCAN.net website (see Conference)

Teresa Lanza
Pennsylvania Carcinoid Cancer Advocacy Network 

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NEW - I "Sunny Susan" was invited to write a Blog on the web site of the Arizona Republic
newspaper as they have liked letters I have written to the editors over the years. 
March 26, 2008 was my first Blog.  I have written additional articles, but not
on a set schedule.  You may go to my Blog at http://www.AZcentral.com/members/Blog/sunnysusan

May need to go to archive for each month on right side
below my photo to open older Blogs.

05/12/2008   Poem: Friends Without Faces

05/12/2008  13th Anniversary of Carcinoid Diagnosis May 10, 1995

04/28/2008   Neuroendocrine Tumor assistance via web page for 11 + years

04/19/2008   Book Discussions in Arizona (1983 – 2008)

04/10/2008  The Best Things In Life...Aren't Things

04/01/2008 1 Living a full active life with a rare cancer

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The most recent lecture Dr. W has given was of the  Video recordings
 from The Carcinoid Cancer Awareness (CCAN)
3rd annual patient conference November 11, 2007,
is now available online.
 Access and view them from their website.

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The non-profit organization:
Florida Carcinoid Support Group,
the "Florida Zebras.Org",
has published the first annual
Zebra Calendar to raise funds
for Carcinoid and NETS
Cancer Research.

Click on the SHOPPING tab
or write an Email to:

Price: $15 including shipping!

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The recorded version of the
Web seminar
 Diagnosis & Treatment of Carcinoid Cancer & NETs
on December 15, 2007

Go to CCAN web site:

If you have comments or questions, contact the seminar host,
Robert Wahmann, at: carcinoidaware@aol.com

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 Carcinoid Conference, Norfolk, VA Sept. 2007
 Webcasts from the Carcinoid NETs Conference in Norfolk Virginia

These recordings were produced at the Carcinoid NETs Conference 2007,

held in Norfolk Virginia, and supported by the Carcinoid Cancer Foundation

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ASCO Exhibit in Chicago, June 2007

American Society of Clinical Oncologists (ASCO)



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Video Recordings and Lecture Transcripts of Local and National Patient Carcinoid/NET Conferences

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There was a one day Carcinoid / Net Conference to be held on
Saturday June 16th at the Pasadena Hotel. The program includes
Dr Eugene Woltering and Dr Lowell Anthony from New Orleans LA.
These events will include a Dr from the area and a patient panel.
Tentative agenda is posted however times are subject to change. 
So please check the site for updates.  CCAN is very excited that we
have a opportunity to work with the wonderful Carcinoid Support
groups from CA.  Please register early as space is limited .  To find
out more information or to register please go to _
WWW.CARCINOIDAWARENESS.ORG_   Also watch for updates
regarding The CCAN and the MI support groups Conference to be
held on Saturday August 25, 2007 at the University of Michigan
Towsley Center, Ann Arbor.
Registration will open soon for this event.
The funding for these events has been provided by grants from
both The Carcinoid Cancer Awareness Network INC ( CCAN ) and Novartis.
Any questions please feel free to contact the CCAN office.
Maryann Wahmann, VP Carcinoid Cancer Awareness Network Inc
2480 Hull Ave N. Bellmore NY 11710  Phone: 516 781 7814

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                                                                                                       June 2007

Dear Friends,

Some of our past supporters have told us they thought that CCF and CFCF were both either same or closely collaborating organizations.  Please see letter below which I sent to such a former contributor in response to her answer to my question why she switched her contribution to CFCF instead of CCF. Please let’s discuss this issue at the board meeting tomorrow.


Dear Amy,

     Thank you very much for your e-mail and explaining your reason for supporting the Caring for Carcinoid Foundation.  I appreciate your openness and your kind words.  Congratulations on the birth of your son!  I wish you a lifetime of happiness with the newest addition to your family.

      In response to your question, I would like to explain that funding that goes to the Caring for Carcinoid Foundation and funding for the Carcinoid Cancer Foundation is not actually earmarked for the same purposes.  Nor do the two foundations work together. 

       The Caring for Carcinoid Foundation, formed only three years ago, chose a name that closely resembles that of the Carcinoid Cancer Foundation, established nearly forty years ago.  Even our acronyms are extremely similar, CFCF (Caring for Carcinoid Foundation) and CCF (Carcinoid Cancer Foundation).  While both foundations are devoted to carcinoid patients and their families, our goals are very different and the means of achieving these goals differ as well.

     The money contributed to the Caring for Carcinoid Foundation goes for funding one narrow area, that of genetically oriented research to find a cure for small intestinal carcinoid tumors in the next ten years, a figure that has already been revised by the Caring for Carcinoid Foundation.  This is a good and commendable goal but one that is not considered realistically obtainable within the next decade or two in the opinion of many carcinoid specialists and of those doing this research.

     We at the Carcinoid Cancer Foundation believe that it is crucial to focus on better awareness of the disease and other related neuroendocrine tumors, earlier diagnosis, better diagnostic tools, and better use of treatments currently available.  We are also committed to education and research on ALL of the locations of carcinoid, including lung, stomach, thymus gland, pancreas, colon, rectum, and ovaries (each of these have unique characteristics), with the ultimate goal of finding a cure.

     Attention must also be directed to the carcinoid syndrome itself and to other related neuroendocrine tumors and their syndromes, such as Gastrinoma, VIPoma, Insulinoma, Glucagonoma, etc.  Further, we believe there is the need for better use of existing treatments, as well as the development of new treatments, to improve the quality of life for carcinoid sufferers, and most important, to prolong their survival.

     In our opinion, the areas listed above receive only token attention by the Caring for Carcinoid Foundation, whereas the Carcinoid Cancer Foundation strongly supports all these goals, as well as research on new diagnostic methods and all varieties of research directed towards a cure.

      While the Carcinoid Cancer Foundation, which has existed for close to forty years, often has worked on the aforementioned goals on a shoestring budget, we are very proud of the goals we have accomplished and the research we have funded.  We are not driven by a race against time to aggressive fundraising, though we certainly need and are very grateful for contributions to continue our research, carcinoid/NET awareness campaign, and support activities.  That the affairs of the Carcinoid Cancer Foundation are judged to be conducted in an ethical, honest and open manner is attested to by the Foundation being granted the Better Business Bureau’s seal of approval (http://www.give.org).

      The Carcinoid Cancer Foundation policy has always been to keep separate all support, educational, and research activities from fundraising solicitations.  For example, we do not sponsor a lecture or scientific conference and concurrently at the same venue solicit contributions.  We focus on accomplishing results for meaningful application now, not just promises for the future.

      We are so very appreciative of your support of the Carcinoid Cancer Foundation and your continued commitment to the carcinoid community.  Please let us know if we can be of assistance to you at any time in the future. 

Very Truly Yours,

Monica Warner MS, RD, CDN
Research Coordinator and Director of Development
Carcinoid Cancer Foundation, Inc.
333 Mamaroneck Avenue  # 492
White Plains, NY 10605
Tel: 888-722-3132

Serving the carcinoid/NETs  patient
and medical community since 1968 


“Meets Extensive Standards of
America’s Most Experienced Charity Evaluator”


 CLICK above on blue lines 







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 Photos now available from the first Zebra Ball Click Here

The Second annual benefit event

The Zebra Ball (tm) - Stars for the Stripes (tm)

will be held February 9, 2008


* * * * * * * * * * * *
 February 10, 2007
 the first annual benefit event
The Zebra Ball (tm) - Stars for the Stripes (tm)
 will be held, in Chicago, IL, to support
The Carcinoid Cancer Foundation, Inc.
a non-profit organization with a mission to encourage and
support research in addition to educating the general public
and healthcare professionals regarding carcinoid
and related neuroendocrine tumors.
For details, and updates, frequently check the web site http://www.thezebraball.com

* * * * * * * * * * * *

WEBCASTS of lectures from the Philadelphia patient
conference are now online
The National patient Carcinoid/NET Conference 2005 was held
 on September 22, 23, 24th in Philadelphia, PA

This conference was videotaped and all lectures are now

To view webcasts of the lectures and photos from the Philadelphia
conference go to:


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NET NEWS, Vol 1, Issue 1, Winter-Spring 2006
Published by The Carcinoid Cancer Foundation, Inc.
You can access this newsletter from:

The Carcinoid Cancer Foundation (CCF) has existed for close to forty years. In 1997 it produced its first website which made available to the general public and the medical community information about carcinoid and related neuroendocrine cancers. The incidence of these rare cancers is 3 new cases diagnosed per 100,000 people in the United States which equals approximately 8000 new cases per year. The philosophy of CCF has always been to disseminate accurate, up-to-date information about diagnosis, treatment, and surveillance options to maximize survival and quality of life for those individuals suffering with these diseases. We strive as the multitude of carcinoid/NET national and international experts have been doing (some for decades) to find a cure. In the meantime we must focus on educating the medical community to find the best diagnostic and treatment options available. CCF has and is working closely with both US and international medical experts and support groups. Many people may not be aware of all the various activities in which the Carcinoid Cancer Foundation is involved. This first newsletter enumerates CCF's role in patient advocacy, research, and dissemination of medical information and gives a summary of accomplishments in the year 2005 and plans for the year 2006.

Without your collaboration our accomplishments could not have been possible.

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The Carcinoid Cancer Foundation, Inc., has a nice section to their
web page under Awareness called "Show Your Stripes".  These products
are available for local chapters to raise awareness of Carcinoid and other
Neuroendocrine tumors (NETs) and for fund raising projects.  CLICK HERE

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Carcinoid Cancer Awareness Network, Inc. (CCAN) have put up a very
nice web site and shall be adding to it from time to time, as we all do.
Visit their web site: http://www.carcinoidawareness.org

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Carcinoid/Neuroendocrine Tumors: Diagnosis and Treatment

What’s Tried and True – What’s New?
Symposium for patients, caregivers, family, friends, & medical professionals
Guest Speaker: James C. Yao, MD, MD Anderson Cancer Center, Houston, TX
Sunday, April 2, 2006
1:00 – 5:30 pm
Mount Sinai Hospital, New York, NY
For more information and to register (click on link):
Flyer, Registration Form, and Program
Register early. Space is limited.
The NECC is excited to be hosting a Regional Carcinoid/Neuroendocrine
Tumor Conference to be held in the
Boston area on June 16th 2006.
 We are fortunate to have as our keynote speakers
world renowned researcher, Judah Folkman MD
and Matthew Kulke MD.
For more information about New England Carcinoid Connection
and its upcoming conference, please
visit our website: www.carcinoid-newengland.org.  
NEW - posted Feb. 13, 2006
We are pleased to announce that the Association of Cancer
Online Resources (ACOR) has agreed to host a Listserv called
Carcinoid-Dr.  Members of the Listserv communicate with each
other by sending  e-mails to the Listserv, which then distributes
the messages to all other members. This Listserv was activated
in February 2006.
 Membership in this Listserv is limited to healthcare professionals
Carcinoid patients and their caregivers are welcome to tell the
members of their medical team about this resource. 
Any healthcare professional who wishes to subscribe
should send an e-mail to carcinoid-dr-request@listserv.acor.org
and describe their professional credentials and their reasons for
joining, and provide their office address and phone number.
 Feel free to share this information with other Carcinoid
and neuroendocrine patients and their caregivers, as well
as any healthcare professionals who you believe may be
interested in participating in Carcinoid-Dr.
NEW - The Carcinoid Poem Click HERE
 Used with permission from the author
Leslie H. Sobin M.D., FRCPath
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Dec. 2005 .... Below is the letter Gradon has composed to assist him in his
community service project for the National Junior Honor Society of Sinaloa
Middle School, Simi Valley, CA.  So far he has sold more than 100 books. 
You may contact him via his mother Karalyn Faulkner email: kfaulkner4@adelphia.net.

Dear Friends,

          I am asking you to donate money toward the purchase of  one of the very first books on diagnosing carcinoid cancer.    A lot of doctors do not know enough about carcinoid cancer symptoms and what to look for to diagnose it. So, if a person comes to see them and they have read the carcinoid book, they can help that person correctly and help protect them instead of hurting them more. If you send me the money I will make sure the books we purchase gets into the hands of doctors who do not know enough about carcinoid cancer.

          My dad has carcinoid cancer and was diagnosed with it in April of 2004. He had severe pain.  The doctors thought it was from a   kidney stone but when they went in to get it, there was a tumor not a stone.  He went to a lot of different doctors and one finally knew what he had.  He told us he has carcinoid cancer and it is the slowest growing cancer. Also, he was told not to worry about it yet because it would be a long time before he had to do anything. My mom went online to find  out more about it.  She found out that it was not true!  He had to do something right away. He had to see a specialist in his cancer. She found out that one of the best doctors who deals with  his cancer was in New York. We saved up all summer to go there that fall. We had a lot of help from our family, friends and neighbors.  Some friends donated money and some donated airline miles.  All of our neighbors held a huge garage sale and made money for us. Last fall we went to New York to see the specialist, Dr. Warner.   He told us all about carcinoid cancer and what to do about it. My dad is still working on getting his cancer better.

          My dad was very lucky to find out about his cancer and lucky to have my mom find out the RIGHT information about carcinoid cancer.   The books cost $15 a piece.  Please help me purchase the book made  for diagnosing carcinoid cancer and getting  people with this illness the help they deserve.  Together I hope we can help save people time, money and especially their lives by giving more doctors information.

           Thank you very much,

           Gradon Faulkner 

             Please make checks payable to :  Healthcare Foundation

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The adult children of David Hanson, who died of Carcinoid Cancer
on September 23, 2001, are entering into charity races to honor him.

- Daughter Melissa Hanson Wright will participate in the Seagull Century, a 100 kilometers
  bike race in   Salisbury, MD on October 8, 2005.  Melissa and her husband will be raising
  money and awareness for the Carcinoid Cancer Foundation. More info and photos shall be
  posted when available.
- David Hanson Jr. and sister Laura Hanson shall run the Chicago Marathon in memory of
  their father, David Hanson, on October 9, 2005.

Donate to the Carcinoid Cancer Foundation on-line by clicking on this LINK

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 Lance Armstrong Foundation's (LAF) Ride for the Roses, Oct. 21 - 23, 2005

I have joined the 2005 Peloton Project and will ride in the Ride for the Roses
October 21-23, 2005.  
The Peloton Project is the Lance Armstrong Foundation's (LAF)
major grassroots fundraising and outreach project. Comprised of cyclists, cancer survivors
and other volunteers who want to make a difference in the fight against cancer, members
raise funds and awareness for the LAF in their local communities. 

 My mother, Dawn Decker, is currently battling carcinoid cancer and several
other family members are either cancer survivors, are still fighting it today, or have lost their life
to cancer.  Seeing how cancer has affected my family, friends and others, I have decided that
it is time for me to do my part to make a difference.

I plan to complete the 75 mile ride in the 2005 Ride for the Roses held in Austin, TX,
October 21-23, 2005.
  This ride will definitely push me to the limits as I have never attempted
such a feat but I know that I will only experience a fraction of what my mom and other cancer
survivors worldwide live each and every day of their lives.  By riding in this event, I will be
helping the Peloton Project assist people living with cancer and also aid in the cancer research
led by the Lance Armstrong Foundation to hopefully one day rid the world of these evil diseases.
I have started my part, now it’s time for you to do yours.

When you sponsor me in this ride, you will be showing your concern and support for
cancer survivors and their loved ones. 
I’m sure each and every one of you can say your
lives have been touched someway by a person battling cancer.  This is your way to say, “I care
what you have gone through.  I want to help.”  Donations can be large or small…every
dollar counts.  You can go to http://www.livestrong.org/peloton and donate to Peloton
Member ID# 90252740
or talk to me (979-739-1511)  about other ways to donate. 
Donations have to be in by September 16, 2005.

I want to thank you for helping support me in this ride not only for myself, but for my
mom, Dawn, and everyone else who is fighting a battle that they should not have to fight. 
And hopefully with our help, one day they won’t have to.  Thank you and Live Strong.


Justin Decker
Texas A&M Class of 2005

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Friday Nov. 11, 2005 from 7 PM -11 PM.

at the Bellmore Knights of  Columbus. The cost will be $80 per
person. This includes a Buffet dinner and  a full open Bar. There will be a
DJ for your listening pleasure as well as for  dancing. The evening will be
filled with raffles including 50/50 and many great  prizes. We will also have a
sports and entertainment memorabilia silent  auction.
All Profits will be used for awareness projects and research both  at the
local and national level. 

Anyone attending  the dinner dance is invited to be our guest  for a medical
seminar open to   anyone wanting to know  more about Carcinoid Cancer .A sit
down lunch will be served.
Our special guest speaker a renowned Carcinoid specialist

Eugene Woltering, MD
November 12,  2005
10:30 AM -3:00 PM
Marriott Hotel, Uniondale, NY 11553

To attend just the medical seminar the cost will be $15 per  person.

Space is limited So please RSVP by NOV 2

Please make all Checks payable to CCAN INC and mail to 2480 Hull Ave  N.
Bellmore NY 11710

Anyone interested in  nearby hotel information and rates  please contact me.

Maryann  Wahmann
VP Carcinoid Cancer Awareness Network INC. (CCAN)
Chair of the LI  NY Carcinoid Cancer Support Group

+ + + + + + + + + +
I wanted to share the status on the fundraiser CCAN had started  to help Dr
Woltering and Dr Anthony  with  their  research  Lab.

First I like to thank all of you that have sent in the  donations.

CCAN has donated 5,000 to start the fundraiser off . CCI (Connecticut
group) donated $1,000. To date we have received $1,150 private  donations. Bring
the total to $7,150. I will be mailing a check over the weekend to Dr

If you would like to make a donation. Please mail a check made out to  CCAN 
mail to 2480 Hull Ave N. Bellmore NY 11710. Please write LSU fund in memo

516 781 7814

(Above posted 13 October 2005)
  + + + + + + + + + +

SEA (Support, Education & Awareness for Carcinoid
Patients) has published a concise, referenced, pocket
guide to the diagnosis and treatment of Carcinoid, co-
authored by Richard Warner, MD and Chip Rueben, MS. 
The book, Titled
Carcinoid Tumor: A Guide to Diagnosis
and Treatment
.  The book is a 5"x7", tabbed, spiral
bound, booklet.  The goal of SEA in producing this guide
is to make these books available to as many physicians
as possible.  To obtain details on ordering a copy of this
book contact
Nickolette Way  (818)951-3995  or  Nik
Neville  (909) 982-8709 or
email at: sea4carcinoid@msn.com

 First posted June 18, 2005.

 + + + + + + + + + +

Carcinoid Cancer Awareness

Saturday, August 13th, 2005

8:00 a.m. at Fort Collins, CO City Park

for the
Caring For Carcinoid Cancer Foundation
and the
Poudre Valley Hospital Foundation Cancer Project. 
Link for the web site CLICK HERE

Activities: 5K and 1 Mile fun run/walk; Live music by the "Altered Ego's"; Children's Jump Castle; Free Food and Drinks; Roadside Entertainment; Prizes for age bracket winners of all ages.  Award ceremony after the race!!  Educational Exhibits.
Register Online or at: jeanne@runforhope.net

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 + + + + + + + + + +

Judy Golz, a carcinoid patient from the New Jersey support group,
was  featured on "Mystery Diagnosis", Monday, November 15, 2004,
on the Discovery Health Channel at 10 p.m. EST.

 + + + + + + + + + +

 + + + + + + + + + +
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 + + + + + + + + + +

Julie dedicated her Mitzvah (Good Deed) Project to helping patients with Carcinoid/NET Cancer, raising nearly $10K for the Carcinoid Cancer Foundation, which benefits all of us.  Julie’s good deed was entered into a competition by Kohl's Department Stores, awarding the winner a $5K College Scholarship + $1K to the charity of their choice.  She won first place at the Store Level and is going on to Regional! 




My Carcinoid Mitzvah (Good Deed) Project


Hi. My name is Julie Beth Greenwood and I am eleven years old. I will become a Bat Mitzvah, “Daughter of the Covenant,“ in December 2004. For my Mitzvah (good deed) Project I have chosen to raise money to help support the research of the Carcinoid Cancer Foundation. It is important for me to do this because of my Dad’s situation.

When I was eight years old my father was diagnosed with a very rare cancer called Carcinoid. I am very frightened and sad. I do not want my father to die. Because the Carcinoid Cancer Foundation was able to do research, my Dad is still here today. Dr. Warner introduced my father to Chemotherapy and Octreotide. After that my Dad had several treatments called Chemoembolizations.

It is very important to me to raise as much money as I possibly can. Please help me to help my Dad, and so many other wonderful people, live. Your donation will go to the Carcinoid Cancer Foundation (a tax-deductible non-profit organization) so they can do more research and find new treatments. I will be very grateful for any donation, big or small.

Thank you for taking a little time to make a big difference!


Julie Beth Greenwood
Chandler, Arizona


* Note from Dad:

The Carcinoid Cancer Foundation performs needed research and disseminates important information on diagnosis and treatment of this rare condition throughout the medical community and to the Carcinoid patient community at large. Due to the rareness of this disease, patient access to this information is often paramount to receiving the proper care and/or treatment. In this regard, the Foundation serves as a lifeline for the patient and a phenomenal resource to the medical professional who may have never treated, nor ever seen, a case of Carcinoid Cancer in their career. In addition, the Foundation also provides a short list of (too few) Carcinoid Experts/Specialists who have amassed extensive knowledge and experience in diagnosing and treating this disease, and who can assist the patient and medical professional in implementing an appropriate treatment strategy, utilizing medicines and procedures which research prove most effective. And, if that’s not enough, the Foundation also coordinates, facilitates and supports ( together with other groups ) Symposiums / Conferences annually, featuring the latest research in diagnosis and treatment of Carcinoid Cancer, presented by the world’s leading Carcinoid Experts/Specialists, rotating it’s location yearly, so that medical professional and patient, alike, from all parts of the country may attend. Last, but not least, the Foundation also strives to educate the medical community so that earlier diagnoses may occur before metastases (spread) precludes the only known cure for Carcinoid; 100% surgical removal of tumor. This tax-free, non-profit, organization deserves our financial support to continue its very important mission, for which no other entity duplicates. Without the Carcinoid Cancer Foundation, I don't think many of us would have a very good prognosis or quality of life. Please support the Carcinoid Cancer Foundation by making a donation in honor of Julie’s Bat Mitzvah. Thank you!

Robert Greenwood



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Please read last section on this page - below.  Thank you, Susan, 1-26-2009

Since 1996 --- when I first located others with Carcinoid --- I have answered every email sent to me, although some replies were delayed longer than I liked. I am NO longer able to reply to all e-mails due to the volume and other things going on in my life (all good).  I do love hearing from others, but an unable to reply to all individually.  I shall not forget my many Carcinoid friends and of course shall reply to you … as time permits. 
This web site was 20 years old on April 27, 2017.

Since my husband "retired" I am away from my computer for days, and sometimes, weeks at a time.  Yes, there is wireless internet and we have tried that a number of places.  But, if I deal with email when we are away from home then it is not a "restful vacation" for me.

PLEASE use the SEARCH capability at the top my pages.  You may search for a word, a phrase, a drug, a treatment, a book title or anything you can think of. You may search this site only, or search the complete World Wide Web.

To speak with a person please know you may call the “telephone information and support line” of the Carcinoid Cancer Foundation, Inc. (CCF), Tuesday through Thursday  10 a.m. to 4 p.m. Eastern Time at  1-888-722-3132 (free) or 1-914-693-1001.   “The information and support line” is staffed by medical professionals.   Mondays and Fridays are research days, if you call then and do not reach a person do leave a clear message.  The Carcinoid Cancer Foundation’s (CCF) superb web site is at http://www.carcinoid.org

CCF -  Serving the carcinoid/NETs  patient and medical community for close to forty years (chartered in 1968)
   “Meets Extensive Standards of America’s Most Experienced Charity Evaluator”
Better Business Bureau

* * * * * * * * * * * *
DISCLAIMER:  I am a patient and NOT a medical doctor or health care professional.  I share information and links to information that has been helpful to me and that I believe to be correct and good, but I cannot guarantee the accuracy of this information, except for MY stories.  I urge you not to rely only on this information but I believe you should discuss your situation and information with your medical doctors and/or other medical professionals.  "Sunny" Susan Anderson

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Copyright © 1997-2017 Susan L. Anderson. All Rights Reserved.

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