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My SHORT Carcinoid Story
by
Sunny Susan Anderson
Copyright © 1997-2008 Susan L. Anderson. All Rights Reserved.
Updated: March 5, 2010
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I am an advocate for
Carcinoid Cancer
awareness and self-help support groups for Carcinoid patients and their
families. I am a survivor of a neuroendocrine cancer called
Carcinoid, diagnosed
May 10, 1995,
and also Infiltrative Ductal Carcinoma (IDC) breast cancer, diagnosed
June 18, 1999.
Fortunately for those of us with Carcinoid it is a slow growing cancer or
most of us would have died before the diagnosis was found. I
am thankful I have always been an optimist; I see the glass as half full and not
half empty.
I call my quest for a diagnosis “The Trials and Tribulations of Sunny Susan”.
In 1987 I was diagnosed as anemic, for the first and last time, no cause
was ever found, but I was told it was “stomach bleeding”. After
years of searching for cause of abdominal and stomach pain, during surgery for
an obstruction
May 10, 1995,
I finally had a diagnosis -
Carcinoid Cancer,
a slow growing neuro-endocrine cancer.
The previous six months I had lived on ice cream milk shakes, vomiting when
tried to eat anything else, in severe constant pain, and lost 62 pounds.
I had bright red “flushing” of the face, neck, chest and arms, which
doctors ignored when my husband and I would mention this symptom.
I would not have been flushing without metastasis in my liver.
Over the years I consulted with several doctors, was admitted to the
hospital many times for partial bowel blockages, and underwent multiples tests
searching for answers. Testing included:
upper and lower GI’s, ultrasounds of liver, pancreas and abdomen, sigmoidoscopy,
colonoscopy, barium enema with air, cat scans of chest, abdomen, pelvis,
gastrointestinal endoscopy, stomach lining biopsy, liver biopsy, chest x-rays,
mammograms, hydrogen breath test, gall bladder surgery, small bowel
enteroclysis, and much blood work, but NEVER for the things that would have
shown the presence of a neuro-endocrine tumor (Chromogranin-A., Serotonin,
etc.). Since then I have had several bone density scans,
nuclear OctreoScans and heart echocardiograms.
What I found on the internet when I started my search in 1995 was mostly old,
and I refused to accept what I read -- that with a
diagnosis
of Carcinoid I had only from
2
to 5 years to live.
It has been said that Carcinoid is a "looking good cancer" -- most of us look
healthy and others can not tell that we have a terminal disease; also Carcinoid
is one of the most costly cancers to treat -- because many people live with it
for years and / or decades, thus have long-term treatment costs.
I saw four doctors, in
Arizona,
all were “wait and see – do nothing”. I had the same
"complaints" – pain various places, diarrhea,
constant severe fatigue, and weakness.
I was told many times
that Carcinoid is a “chronic illness” and to "learn to live with it". No, I
did not care to accept that passive role!
My search for cause of stomach and abdominal pain began in 1987 and did not end
until 1998 when I consulted in person with one of the worlds leading experts on
Carcinoid, Dr. Richard R. P. Warner, M.D., of
New York City,
who turned my life around!
After my diagnosis and
treatment, I felt a very strong desire to assist others in their search for
information and in starting local self-help groups. Since I am a Type A
personality and have always reached out to assist others it was only normal for
me to share the information I had found through research with others.
I
have never been bored a day in my life and
never have enough hours in the day or days in the week. I now maintain 77
mailing-lists in my computer address book of people who either have Carcinoid or
a interest in Carcinoid. I send information to all of my mailing-lists when
new research papers by Carcinoid expert doctors, such as the doctors at this
conference, are available.
April 27, 1997, I
put up my web page http://www.carcinoidinfo.info.
I provide information for medical / drug databases, information from leading
Carcinoid doctors on how to treat and monitor Carcinoid, local Carcinoid support
groups, humor, books, Bluegrass music, prayer lists, travel, political issues,
Arizona information, cowboy poetry, and much more that may assist a person in
leading a full and active life while LIVING with
Carcinoid;
and have links to information I wish had been on-line when I started my
research. I am happy to assist others in their quest for information and
understanding, not only from my page, but from the many links available; and in
starting local Carcinoid support groups for self-help. When
this page was twelve (12) years old,
April 27, 2009,
there had been 281,978 "visits" to it. The
Carcinoid Cancer
Foundation,
Inc. also put up their web page in April 1997 at:
http://www.carcinoid.org.
In 1999 I assisted Bea in
the formation of the Capital Area Cancer Survivors (Maryland, Washington, D.C. &
Virginia) support group by speaking with her on the telephone, emailing her
ideas for setting up a group, suggesting topics that could be presented to a
group, and sharing names of some people living in her area for her to contact.
Later I assisted in the formation of the local support groups in
Arizona,
Ontario
Canada,
Texas
and other locations. I am happy to send
out how to organize and topics for discussion to anyone that asks me for
assistance. I list local support / self-help groups on my web page at:
support.htm
In August 2001 I became a
board member of a new forming California Carcinoid Fighters (CalCF) self-help
support group. Although living in
Arizona
I flew over monthly for the board meetings and programs. CalCF put on a large
international Carcinoid conference in Sept. 2003. Later I resigned from this
board and am concentrating my energy on my web page and replying to the email
pleas for help that are generated by my web page.
I believe anyone with a
diagnosis
of
Carcinoid Cancer,
or ANY kind of cancer needs to be pro-active and assertive.
We may be assertive without being
disagreeable.
The key is practicing “The Golden Rule”, being pleasant and nice to everyone at
all times, but being persistent and clear in saying what we want done,
which reports we expect to receive, and asking questions.
All doctors and their staff are people too, who must deal with stress and
a heavy work-load. Always be polite, smile, and nice to the
doctor, and his staff, we need them to be our friends and not dread seeing our
name on the appointment sheet.
Dr. Warner started me on Sandostatin
(octreotide acetate) in early 1998, switched to Sandostatin LAR (long acting
release) in 1999; added Interferon Alfa 2-b in 1999 and switched to Peg Intron-A
in 2003. This joint treatment, along with my second surgery
in October 1999, that included a liver resection, has me stable.
The CAT scans in December 1999 showed a nodule
at the base of my lung, which had not been there during the October 1999
surgery. I chose to wait as I had not been on Interferon
Alfa 2-b very long. The CAT scans in May 2000 were negative;
the nodule at the base of my lung was no longer there. I
feel the combination of Sandostatin LAR and Interferon Alfa 2-b (now Intron-A)
shrank the nodule and has kept everything under control since then, as all CAT
scans, done twice a year, are negative.
Routine testing is part of every person’s life
who is dealing with Carcinoid, and requires an aggressive doctor.
Once each year I have mammograms and twice
each year I have CTs of
chest, abdomen and pelvis. Three times each
year we do testing of:
5-HIAA 24-hour urine test, Serotonin Serum, Serotonin Whole Blood, Tryptophan
and Chromogranin-A, plus CBC (complete blood count), Hepatic Profile, Lipid
Panel, Hemoglobin A1c, TSH, and any other test my local oncologist or internists
believes is necessary at the time. Monthly
we draw blood for a CBC and flush my Groshon porta catheter.
What I am doing in regard to my Carcinoid is
pro-active, and it is not right for everyone. We all must feel our own way as
to how we wish to take care of ourselves and our cancer; there are no right or
wrong ways, just different ways. This is what works for me; it may not work
for everyone.
December 2004, I was diagnosed with Type 2
Diabetes, so now have an additional
challenge
regarding learning about a disease and managing
it.
There have never been enough hours in the day
for me. I have no way of knowing how long I will have this level of GOOD
quality life (pain-free and having energy). My goal is to make the most of each
day, count my blessing, have some good “belly laughs”, assist others, and live
each day to its fullest enjoying each and every one. I fully expect to die of
“old age” and not “carcinoid” I remain optimistic about my future. As my
wonderful husband, Howard, says "each day is a gift"!
Feel free to drop me a line, if
you would like to "visit" or ask questions.
To email me
SunnySusan@Cox.Net (Please see below)
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 08:43 AM
Poem: Friends Without Faces
http://www.azcentral.com/members/Blog/sunnysusan/23352
05/12/2008 08:40 AM
13th Anniversary of Carcinoid Diagnosis May 10, 1995
http://www.azcentral.com/members/Blog/sunnysusan/23351
04/28/2008 02:50 PM
Neuroendocrine Tumor assistance via web page for 11 + years
http://www.azcentral.com/members/Blog/sunnysusan/22544
04/19/2008
10:59
AM Book Discussions in Arizona (1983 – 2008)
http://www.azcentral.com/members/Blog/sunnysusan/21868
04/10/2008 11:09 AM:
The Best Things In
Life...Aren't Things
http://www.azcentral.com/members/Blog/sunnysusan/21236
Since my diagnosis my
husband and I have: spent two weeks on the ocean edge in
Kauai, Hawaii (1997), have
taken a two week cruise to and from
Alaska (2000), taken a two week
cruise to and from Hawaii (2004), in addition to other trips and activities. (Please see my
"Travel" section for the latest and also photographs.) In January 2004 I
took a Mexican cruise with three gals from my Red Hat Society chapter, and in
March 2004 another friend (who also went on Mexican cruise) and I had a very high
energy, adventure trip to Costa Rica. My
husband and I enjoyed a winter 2005 trip to
Wyoming to dog sled, snow mobile, snow cat
with visits to Yellowstone National Park and Teton National Park, Wy (were also
there on 9/11/2001). In
Oct. 2005 we had the "trip if a lifetime"
two plus weeks in the Galapagos Islands, Ecuador.
We then did a Whales and Wildlife Cruise in the Sea of
Cortez / Baja, Mexico in January 2006. We drove to the
Carcinoid Conference in Portland, OR, Sept. 2006 and took more than a month
coming home down the Oregon and California coasts.
During the summer of 2007 we enjoyed a
13 1/2 week driving trip to and from Alaska.
We frequently mention that each and every day of the Alaskan adventure was
wonderful! Later in 2008 we visited the Polar Bears
north of Churchill, Manitoba, Canada.
We were gone February, March and early April 2009 for a great trip to
New Zealand and Australia!
In January and early Feb. 2010 we visited Iguascu Falls in
Brazil, cruised among the icebergs and penguins of
Antartica, also visited Argentina, Chile, the Falkland Islands, and
Uruguay.
With those trips
I have visited ALL 50
states of the USA, plus Canada, Mexico, France, Switzerland, England, Wales,
Germany,
Costa Rica, Ecuador, New Zealand , Australia, Brazil, Argentina, Chile, Falkland
Islands, Uruguay and Antartica. We "camp" (now in a small motorhome) here in Arizona, often taking
my husbands 10" telescope so he can take deep space photographs; we also
"camp" at Bluegrass Festivals and Bluegrass music camp-outs. We enjoy travel and the
out of doors, in addition to art, music, history, science, books and new technology.
We both like to learn new things all of the time. What is right for one person is NOT
correct for another one. But, I believe in "The Golden Rule" and try to
practice that.
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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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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 12 years old on April 27, 2009, 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
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
Copyright © 1997-2010 Susan L. Anderson. All Rights Reserved.
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