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CARCINOID CANCER
A rare form of "slow-growing" neuroendocrine cancer
Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
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CARCINOID CANCERA rare form of "slow-growing" neuroendocrine cancerSusan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
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Updated: January 26, 2012 * * * * * * * * * * * * * * * * * * * * * * * *
2012 Ottawa Carcinoid NeuroEndocrine Conference and Symposium
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NEW - I have been working on a
book for one year, it is 1/3 memoir, 1/3 genealogy,
AND 1/3 Carcinoid - NETs. On Jan. 8, 2012, I
sent the rough draft to the people who
are doing the evaluation and later shall edit and assist in layout, cover design
and all sorts of things involved with getting a book published. Later this
week I
must choose photographs to scan and consider for the book.
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Ochsner, Kenner, LA "The DREAM TEAM"
click here: http://www.ochsner.org/programs/neuroendocrine_tumor_program/
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2nd Worldwide NET Cancer Awareness Day was November 10, 2011
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Most of the
following is NEW. Please note that throughout
my web site most topics are the same, but MANY have
new URL (links).
This
web site was 14 years old on April 27, 2011, and
my plan is to keep it updated
for many years to come.
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NEW - our 2011
Christmas letter in "Genealogy" - NEW
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January 2009
This document was prepared in
order to further the Carcinoid Cancer Foundation's
educational goals and inform you about the existence and
characteristics of
carcinoid cancer. While the information contained herein
represents up-to-the-minute
information about carcinoid cancer, it is not to be used
as a substitute for a visit
with your doctor if there is any question about your
condition.
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NET Guidelines
from NANETS (North American NeuroEndocrine Tumor Society)
http://nanets.net/research/articles/nanets-guidelines
This information also in the sections of
this web site under:
1) Monitoring Carcinoid, 2) Coping and 3) Resource Library
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The North American Neuroendocrine Tumor Society (NANETS) Guidelines: Mission,
Goals, and Process.
Authors: Kvols, Larry K. MD *; Brendtro, Kari L. +
DOI: DOI: 10.1097/MPA.0b013e3181eb7451
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The Pathologic Classification of Neuroendocrine Tumors: A Review of
Nomenclature, Grading, and Staging Systems.
Authors: Klimstra, David S. MD *; Modlin, Irvin R. MD, PhD +;
Coppola, Domenico MD ++; Lloyd, Ricardo V. MD, PhD [S]; Suster, Saul MD [//]
DOI: DOI: 10.1097/MPA.0b013e3181ec124e
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NANETS Consensus Guidelines for the Diagnosis of Neuroendocrine Tumor.
Authors: Vinik, Aaron I. MD, PhD *; Woltering, Eugene A. MD +;
Warner, Richard R. P. MD ++; Caplin, Martyn MD [S]; O'Dorisio, Thomas M. MD
[//]; Wiseman, Gregory A. MD [P]; Coppola, Domenico MD #; Go, Vay Liang W. MD **
DOI: DOI: 10.1097/MPA.0b013e3181ebaffd
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NANETS Treatment Guidelines: Well-Differentiated Neuroendocrine Tumors of the
Stomach and Pancreas.
Authors: Kulke, Matthew H. MD *; Anthony, Lowell B. MD +;
Bushnell, David L. MD ++; de Herder, Wouter W. MD, PhD [S]; Goldsmith, Stanley
J. MD [//]; Klimstra, David S. MD [P]; Marx, Stephen J. MD #; Pasieka, Janice L.
MD **; Pommier, Rodney F. MD ++; Yao, James C. MD ++++; Jensen, Robert T. MD
[S][S]
DOI: DOI: 10.1097/MPA.0b013e3181ebb168
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The NANETS Consensus Guideline for the Diagnosis and Management of
Neuroendocrine Tumors: Well-Differentiated Neuroendocrine Tumors of the Jejunum,
Ileum, Appendix, and Cecum.
Authors: Boudreaux, J. Philip MD *; Klimstra, David S. MD +;
Hassan, Manal M. MD, PhD ++; Woltering, Eugene A. MD *; Jensen, Robert T. MD
[S]; Goldsmith, Stanley J. MD [//]; Nutting, Charles DO [P]; Bushnell, David L.
MD #; Caplin, Martyn E. MD **; Yao, James C. MD ++
DOI: DOI: 10.1097/MPA.0b013e3181ebb2a5
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The NANETS Consensus Guidelines for the Diagnosis and Management of
Gastrointestinal Neuroendocrine Tumors (NETs): Well-Differentiated NETs of the
Distal Colon and Rectum.
Authors: Anthony, Lowell B. MD *; Strosberg, Jonathan R. MD +;
Klimstra, David S. MD ++; Maples, William J. MD [S]; O'Dorisio, Thomas M. MD
[//]; Warner, Richard R.P. MD [P]; Wiseman, Gregory A. MD #; Benson, Al B. III
MD **; Pommier, Rodney F. MD ++
DOI: DOI: 10.1097/MPA.0b013e3181ec1261
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The North American Neuroendocrine Tumor Society Consensus Guideline for the
Diagnosis and Management of Neuroendocrine Tumors: Pheochromocytoma,
Paraganglioma, and Medullary Thyroid Cancer.
Authors: Chen, Herbert MD *; Sippel, Rebecca S. MD *;
O'Dorisio, M. Sue MD, PhD +; Vinik, Aaron I. MD, PhD ++; Lloyd, Ricardo V. MD,
PhD [S]; Pacak, Karel MD, PhD, DSc [//]
DOI: DOI: 10.1097/MPA.0b013e3181ebb4f0
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NANETS Consensus Guideline for the Diagnosis and Management of Neuroendocrine
Tumors: Well-Differentiated Neuroendocrine Tumors of the Thorax (Includes Lung
and Thymus).
Authors: Phan, Alexandria T. MD *; Oberg, Kjell MD, PhD +; Choi,
Junsung MD ++; Harrison, Lynn H. Jr MD [S]; Hassan, Manal M. MD, PhD [//];
Strosberg, Jonathan R. MD [P]; Krenning, Eric P. MD, PhD #; Kocha, Walter MD **;
Woltering, Eugene A. MD ++; Maples, William J. MD ++++
DOI: DOI: 10.1097/MPA.0b013e3181ec1380
The NANETS Consensus Guidelines for the Diagnosis and Management of Poorly
Differentiated (High-Grade) Extrapulmonary Neuroendocrine Carcinomas.
Authors: Strosberg, Jonathan R. MD *; Coppola, Domenico MD +;
Klimstra, David S. MD ++; Phan, Alexandria T. MD [S]; Kulke, Matthew H. MD [//];
Wiseman, Gregory A. MD [P]; Kvols, Larry K. MD *
DOI: DOI: 10.1097/MPA.0b013e3181ebb56f
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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. Also see "Awareness"
WE ARE THE FACES OF CARCINOID
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.
Sincerely,
"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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Visit the totally new /
redesigned web site of the
Carcinoid Cancer Foundation, Inc.
www.carcinoid.org
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Netzwerk Neuroendokrine
Tumoren (NeT) e.V.
Support in Germany, Austria and Switzerland
www.netzwerk-net.de
Also listed in the "Local Support Groups" section of this site.
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Click on "Other's Stories" to your left for the up-to-date
story of Bill Evans in California.
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Visit the NEW Blog of the Carcinoid
Cancer Foundation, Inc.
URL:
http://carcinoid.wordpress.com
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On the Travel section of this web site, click button to your left:
Photos from some of our trips.
On photo pages click on any "thumbnail"
image for a larger view.
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When she was finally diagnosed with carcinoid
cancer in 1995, Susan Anderson
had already spent 8 years trying to find out what was the cause of
her “anemia,”
pain, and losing 62 pounds in 6 months. Little ...
To read the full blog please click here:
carcinoid.wordpress.com
Then scroll down to May 1, 2010
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Carcinoid
Cancer Awareness Network
CCAN Inc
2480 Hull Ave
N. Bellmore NY 11710
516 781 7814
New Toll Free # 1 866 850 9555
carcinoidaware@aol.com
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under "Genealogy"
our 2010 Christmas / Holiday letter with pictures
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Join me, Susan Anderson, and other
Carcinoid friends --from
around the world, on www.facebook.com
see under my CAUSES -- CARCINOID
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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
www.carcinoidawaren
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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Howard & Susan Anderson honored
The AZ Bluegrass Assoc. honored them for their
"25 years of Hosting, Supporting, and Encouraging
Arizona Bluegrass Musicians".
Photo on this site under "Bluegrass Music".
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Off topic, leading a full and active life while living with Carcinoid.
Our 2010 Christmas letter is in
"Genealogy" and
Photos from our latest adventures ... New Zealand
- Australia, the Polar
Bears north
of Churchill, Manitoba, Canada are in "Travel",
both on this
web site, click on those in the list to your left.
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People Living With Cancer
this is now the Cancer Net
link:
http://www.cancer.net
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Assisted Living Directory
Also listed in Resource Library section of this web site
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Susan's Family Tree (Ahnentafel Chart)
Once-Monthly Somatostatin Analogue Increases Overall
Survival in Carcinoid Syndrome
published May 16, 2005 in Medical News Today
by Dr. Lowell Anthony.
Click here http://www.medicalnewstoday.com/articles/24501.php
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A 5-Decade Analysis of 13,715 Carcinoid Tumors published 2003
in The American Cancer Society by Dr. Irv Modlin, et. al.
it is available at
http://www.ncbi.nlm.nih.gov/pubmed/15599742
search the title. Notice in the full article --
the survival increased when Sandostatin was introduced.
See a new listing of the local Carcinoid
support groups that have
with a web site and/or elist for communications.
List in: On-Line Support and Local Support Groups.
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North
American Neuroendocrine Tumor Society (NANETS)
is
composed of physicians
whose main mission is to increase
awareness and knowledge of neuroendocrine
tumors and to
promote education through the dissemination and sharing of
information in the medical community . These physicians also
help to
increase awareness within the general public of these
often rare conditions
by working closely with global support
groups.
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The European Neuroendocrine Tumor Society
(ENETS) is
composed of physicians
whose main mission is to increase
awareness and knowledge of neuroendocrine
tumors and to
promote education through the dissemination and sharing of
information in the medical community . These physicians also
help to
increase awareness within the general public of these
often rare conditions
by working closely with global support
groups.
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Text of presentation given Sept. 30, 2006
by
Howard Anderson
“Living With Uncertainty: Specifically For
Caregivers”
Click here
then scroll down
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Capital Area Carcinoid Survivors
(CACS)
Web site has moved, the NEW URL is:
http://members.cox.net/cacsva/index.htm
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Logan Diving & Salvage (and marine construction - since 1947)
in Jacksonville, FL & Catano, Puerto Rico
Our son Scott's site, he is the President.
Many
interesting pictures, most of which are of Scott, the tall blonde.
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Please read last section on this page - below. Thank you, Susan
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 14 years old on April 27, 2011, and my plan is to keep it updated
for many years to come.
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
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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
Copyright © 1997-2011 Susan L. Anderson. All Rights Reserved.
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Send mail to
SunnySusan@cox.net with
questions or comments about this web site.
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