My Carcinoid Story
by Susan L. Anderson
Updated: 1 April, 2015
There is HOPE for those diagnosed with Carcinoid/NETS.
my 21st year of active, full life: May 1995 -- May 2015.
April 27, 2015
will be the 18th anniversary of this page;
the FIRST by a Carcinoid patient.
April 23, 2014
I began Dialysis
every evening at home
due to being Stage
Chronic Kidney Disease.
is now available in
to view the
90 second book trailer video from
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.
* * * * * * * * * * * *
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.
THE 2012 WARNER ADVOCACY AWARD WINNER
"SUNNY" SUSAN L. ANDERSON
SHINING A LIGHT ON CARCINOID/NETS THROUGH
EDUCATION, SUPPORT, AND A PASSION FOR LIFE
Susan L. Anderson, or "Sunny" Susan as she's
affectionately known, has dedicated her life to
people affected by carcinoid/neuroendocrine
tumors (NETs) and has become an energetic
advocate for, and educator of, the disease. Her
journey began on May 10, 1995, when she was
diagnosed with carcinoid cancer after an
8-year-long battle through one misdiagnosis
began researching the disease and soon learned there
wasn't much information available about NETs. Many
doctors believed patients with NETs had a short time
to live. Born with a self-proclaimed "type A"
personality, Susan refused to accept the supposed
facts. She says, "I was told by every doctor to
'learn to live with it.' Probably the average person
would accept that. I refused to and because of that
I'm still alive."
Through her research,
Susan discovered Monica Warner's website for the
Foundation. From that moment on, Susan Anderson,
Monica Warner, and Dr. Richard Warner formed a team
determined to bring attention to this uncommon
disease and advocated tirelessly for patients
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
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.
To learn more about the Warner Advocacy Award,
Novartis Patient Advocacy
Novartis Oncology Affairs and Patient Advocacy provide
support to patients through an array of programs and
The NET Alliance
The NET Alliance is a Novartis Oncology initiative to
help improve outcomes for patients with NETs
THE WARNER ADVOCACY AWARD
A LASTING TRIBUTE TO MONICA WARNER
To commemorate the life and work of Monica Warner, who passed away in
August 2009, Novartis Oncology, through Patient Advocacy and The NET
Alliance, established the Warner Advocacy Award. This award is presented
annually by Novartis Oncology to honor the patient, advocate, or
caregiver who most embodies the passion, dedication, leadership, and
spirit with which Monica Warner assisted patients, caregivers, and
families affected by NETs.
The recipient will receive an individual nonmonetary award of
recognition. Novartis Oncology will donate $10,000 to an approved
501(c)(3) charitable organization of the winner's choice. Institutions
and non-501(c)(3) charitable organizations are not eligible to receive
"Trials and Tribulations of Sunny Susan"
Fortunately for those of us with Carcinoid, this is a slow-growing rare type of
neuro-endocrine cancer! If it were not most of us would have died YEARS before
our diagnosis! Carcinoid is VERY difficult to diagnose - as so few doctors know
what to look for, or even think of Carcinoid. I feel it vital to consult with
(or have your doctor consult with) one of the small group of doctors who have
devoted their lives to neuro-endocrine tumors of which Carcinoid is the most
Today I am stable due to consulting with one of the great Carcinoid "experts"
(then following his suggestions for my case), speaking with other "experts",
doing VERY aggressive surgeries (two), plus taking Interferon Alfa 2b (now Peg
Intron-A) and Sandostatin LAR! I am very fortunate and thankful! We do not
know how many years this great quality of life shall continue, but I am trying
to make the most of every day, and am a optimist!
I feel anyone with a diagnosis of Carcinoid Cancer, Breast Cancer, or ANY kind
of cancer (and their families) need to be PROACTIVE and assertive /
aggressive. We may be assertive without being disagreeable. I believe the key
is being pleasant and nice to everyone at all times, but be persistent and clear
in saying what we want done, and in saying which reports we expect to receive.
Remember today we are medical consumers and we "hire" our medical team, but all
doctors and their staff are people too, who also must deal with stress and a
heavy work-load. All doctors I have seen since my cancer diagnosis have told me
ASSERTIVE PATIENTS ALWAYS DO MUCH BETTER (no matter what kind of cancer they
have), than the PASSIVE PATIENTS. I try to practice "The Golden Rule" and that
seems to cover most situations, plus it is a good thing to remember and repeat
when in a stressful situation.
The Internet has opened a window on the world and offered us a life-line for
making contacts with others who are touched with the same kind of cancers we
are, and for learning new research information immediately. There was very
little information on-line in 1995 when I started by search for Carcinoid
information, but today there is an avalanche of information, NOT all of it is
from good sources though, so be careful of what you take to heart, but read,
read, read, and print information from the Internet. Not all doctors who say
they really know Carcinoid actually do know it, what tests to order to monitor
it and NOT to take the "wait and see" attitude of you look great, feel OK, so
lets not do any treatment. I do not believe any good physician can keep up with
the huge amount of new medical information published daily; therefore, I am
fortunate to have three Arizona doctors who are very caring and who welcome the
very good Carcinoid research papers I locate, print and take to them.
The beauty of the Internet is I am able to research articles and information
from good medical centers, medical schools, medical doctors, good medical
journals, National Institute of Health, National Cancer Institute, Carcinoid
Cancer Foundation, and also take part in two on-line mailing-lists (devoted to
Carcinoid cancer), answer e-mail from those who have found this web page devoted
to Carcinoid Cancer (and also Breast Cancer). I do this from the comfort of my
home, when it is convenient for me. I do not need to make an appointment, I do
not need to get in the car and drive to a library, I do not need to wait for a
return telephone call or for mail to arrive, and when I hear of a good new book
(cancer/healing/wellness or otherwise) I may order it, as I do my other
research, at 2 A.M. just as easily as at 2 P.M.
During the summer of 1987 I was diagnosed as anemic -- for the first and last
time -- no cause was ever found, but I was told "stomach bleeding".
The internist very carefully probed me with questions. It appears he was
checking to see if I were another anxious, menopausal, depressed, empty nest
woman. This could not have been further from the truth, but he needed to get to
know me. I have never been bored a day in my life and never have enough hours
in the day or days in the week.
At the time I was very active in the Tempe Welcome Wagon, doing the monthly
newsletter, and was chairwoman of the couples monthly activities, day time
canasta, couples canasta, Gad Abouts, the ladies once a month sightseeing group,
plus I attended monthly coffees and luncheons. This in addition to leading the
Contemporary Day Time Book Club I had organized when we moved here in 1983,
doing genealogical research, and hosting Bluegrass music jam sessions in our
home each week. By the way in August 2003 we completed 20 years, in AZ, and 6
years before that in VA of the weekly Bluegrass music jams held in our home.
I had the first, of many, upper and lower GI tests. I was put on
Tagament as no cause of the pain was found, and then changed to Zantac. I
remained on Zantac until mid-1995.
1988 - 1994
Over the years I would be in such severe pain it was difficult to stand
and walk, plus illness with vomiting, something I had not done until this
time of my life. My husband and I had been married for over 17 years before he
ever saw me vomit, I just didn't do it, even with "stomach flu". Throughout
this time we did many ultrasounds to look for gallstones, only to find
Since my family, meaning my father, son and myself, have a pretty high pain
tolerance and are not complainers I put up with far too much through all of the
In 1991 I had a sigmoidoscopy which confirmed diverticulitis and I
learned to avoid all nuts, skins and seeds trying to stave off an attack. I was
later told I had Irritable Bowel Syndrome (IBS). This seems to be a
catch all diagnosis when tests are negative and the physician doesn't know what
is wrong with us, most of us with "mid-gut carcinoid" have been told we had IBS
-- we didn't.
In 1994 I was in the hospital five times, after not setting foot in a
hospital for about 21 years. Pain, ill, vomiting, etc. Finally gallstones
imaged on an ultra-sound -- great, we had found the cause of my stomach pain.
June 1994 had laparoscopic surgery for removal of gallbladder.
Before the removal of my gallbladder the surgeon sent me for the usual pre-op
tests, but also for a Barium Enema with Air (BE/A), nothing imaged.
Surprise, the surgery was needed, I could again eat bacon and grilled cheese
sandwiches without becoming ill. But the pain persisted.
While in Oregon in July 1994, with a girlfriend, I had severe pain on the
final day of our trip. Fortunately I had Tylenol 3 (with codeine) along, I
dropped my friend where she needed to go, returned the rental car (they were
concerned about me there) and went to the Portland, OR, airport. I found two
people who would be on my flight to Phoenix, told them I was in pain and going
to take more Tylenol 3 and please wake me so I would not miss the flight, then
laid down on a sofa. To ask for help is/was totally out of character for me! I
am the one usually in total control, looking out for and directing others.
Both people watched me and let me know when they were about ready to start
boarding the plane. I made it home, back to the doctor the next day, and
into the hospital again for partial bowel obstruction, plus again in the early
fall for the same thing.
In October 1994 I was in pain. My internist was out so I saw another
doctor in the "urgent care" facility. I was told that I was "paranoid" since
my surgery. I meekly left and went on a business trip with my husband to
England. I was in pain the whole ten days, but drove alone to see things and
rode trains alone in central England sightseeing. My husband and I had a couple
of days sightseeing together, but he was on business the rest of the time so he
couldn't be with me. I still remember the pain on the flight home as I was
afraid to take Tylenol 3 due to possible blockage/obstruction. (I should have
The next day after our return from England (late Halloween night 1994) I
was in severe pain, called the doctor (mine again gone) saw the same doctor whom
I had seen before going to England (who had said I was "paranoid"), he
called in another doctor who talked with me and asked if I felt I should be in
the hospital and I said yes. So... back into the hospital again, more
x-rays, GI's and so on. The surgeon who had removed my gall bladder was
called in, he suggested doing a small bowel enteroclesis/enteroclysis, I
agreed. Radiology could not get to me the day it was scheduled and my system
spontaneously opened up, so the test was delayed until I had another attack.
During 1994 while we were looking for the cause of my pain, I removed myself
from SIX organization/boards that I enjoyed!
November 1994 -- May 1995
From early Nov. 1994 onward I was in constant severe pain, and losing weight.
In January 1995 I asked my internist to refer me to a gastroenterologist and he
did so. By time of surgery (May 1995) I had lost 62 pounds.
January 1995, working with the gastroenterologist (who was baffled by
me), we did many tests:
sigmoidoscopy (reconfirmed diverticulitis);
ultrasound of liver, pancreas and complete abdomen (found spots on the
gastrointestinal endoscopy; stomach lining biopsy (found bacterial
mammogram; chest x-ray (also had done before surgery in 1994);
CT of liver and all abdomen (reconfirmed spots on liver);
colonoscopy (reconfirmed diverticulitis);
liver biopsy (severe pain resulted two hours after the procedure, admitted
to hospital, morphine every hour for 7 (seven) hours before started to touch the pain);
hydrogen breath test for lactose (due to vomiting) it was negative;
CT of liver and all abdomen again!
During this period I was "flushing" with sweats (my face, neck, upper chest
and arms would turn bright red). Although we did mention the flushing to
various doctors at the time this symptom was ignored. Now we know this
was caused due to the carcinoid tumors in my liver.
During the spring of 1995 due to severe pain, I had to resign from an
investment club that I co-founded, and several additional activities. The
other co-founder of this investment club had to resign for cancer also, though
about a year before I did. She had colon cancer and then died after it moved to
her liver (she did the resection, removed 80% of her liver and was o-k for a few
May 8, 1995: Finally living on Dairy Queen milk shakes, in severe pain,
vomiting if tried to eat, and having lost 62 pounds (had gone from 160 to 98
pounds), did the small bowel enteroclysis. The radiologist was surprised
when the pump slowed down and stopped. This indicated an obstruction in my
small intestine. The next day did the usual electrocardiogram and etc. getting
ready for surgery.
May 10, 1995, while in pre-op people must have thought I was a nut. I
was smiling and happy! I hadn't eaten for two days so was not in severe pain as
I had been, and finally doctors were going to open me up and learn what the
May 10, 1995 I had abdominal surgery; removed 85 cm. section of small bowel
(mid ileum) containing a Carcinoid tumor, the obstructed small bowel section,
six lymph nodes nearby -- malignant, and had metastis in my liver. I was
in the hospital for 10 (ten) days, and was very happy to finally have a
diagnosis. While in the hospital my 5-HIAA test was 12 (it went up to 19.5
later), and my Serotonin Serum was 1351.
As soon as we had the possible diagnosis, even before pathology returned their
verdict, my husband Xeroxed information about Carcinoid from our Merck Manual
and delivered it to me in the hospital.
Not knowing what was wrong with me, plus the pain and weight loss, over the last
six months was terrible! It was especially hard on me since I am a researcher,
and organized person that is a take charge type of very active controlling
person. I am a Type - A personality and an ESTJ on the
Myers-Briggs personality indicator. Finally I had a diagnosis so was able to
start researching this cancer called Carcinoid..
Due to the eight years of searching and final six months of pain, I never
experienced the stress of being upset or depressed upon hearing the cancer
Finally I had a diagnosis so was able to start researching this cancer called
Carcinoid. At that time, mid-1995 there was very little on the Internet. I
refused to accept what I did find on-line then; that with this diagnosis I would
probably be dead within 2 to 5 years. I said "no I won't", well actually I
think I said "like hell, I'm not going to be dead that soon". But as you
continue reading "My Story" you will see that it took an additional two years
of research on-line and meeting a number of new doctors to really learn about
Carcinoid and assemble the wonderful team of doctors who now work with me.
In June 1995 I had an echocardiogram, all normal. This serves as
a baseline for future heart evaluations. I have had three echocardiograms since
then, all normal.
July 1995 did the three days of nuclear Indium-111 testing with
OctreoScan, there were hot-spots or uptakes in the liver and right lower
quadrant. We next did a CT (full body scan except for head and neck), using
iodine that showed many hot-spots. Then in July 1995, met with doctors at
a regional cancer center (in Tucson, AZ), they decided that Carcinoid was
not in my liver (it was), just go home and do nothing at this time. We
didn't want me to "fall through the cracks" so they agreed they would follow me
every few months if I didn't mind making the trip to the regional facility.
At my request, in Aug. 1995, my case was presented to a "tumor board",
at this regional cancer facility in Tucson, AZ. The board suggested an MRI
(we still haven't done that), and do nothing at this time. This is the
old-fashioned, out of date way of not doing anything for Carcinoid, just "wait
and see". Well, wait and see for what? Wait until REALLY get ill and the
cancer has spread throughout the body?
During the summer of 1995 I met a nurse, who studied with Bernie Siegel
and O. Carl Simonton. She does therapy one on one, and in a group called
"Creative Cancer Patients". She suggested that we set up an official
"Support Board". (See my section called "Support Board".)
Also during the summer and early fall of 1995 I added more prayer time
and experimented with meditation, deep breathing, visualization, affirmations,
journaling of feelings and experience. I found if I kept a good schedule of
doing ALL of these things daily, plus exercise, research on-line, and reading
books on healing, wellness and cancer that it took ALL of my time -- there
weren't enough hours in the day (I've always felt this way.). It did not leave
enough time to enjoy my husband, friends, and life other than dealing with the
cancer, let alone shopping, finances, cooking and laundry. Therefore I cut back
on these activities. It takes awhile for each person to find the right mix of
things to do in their healing process that is correct and works for them.
My husband and I have always had a large home library and are book collectors.
When I returned home from the hospital in May 1995, several friends brought me
books on cancer and wellness to read. I then started to build a good sized
home library on cancer, healing, wellness, diet, and medical books. I
skimmed or read in detail over 100 books during the summer of 1995, and
listened to many books on audio tape. Think I've read the good, the
bad, the ugly, the frauds and the sound medical ones - there is so much out
there that you must be careful what you chose to follow. I have link
elsewhere on my page on how to recognize fraud and scams re: medicine and diet.
(See my section called "Home Library of Cancer/Healing/Wellness/Medical Books".)
In addition to books and audio tapes I have also assembled a fine collection of
CDs and tapes for relaxation and/or meditation. I especially like the
ocean surf, alone and with a few gulls, or with classical piano or guitar music
playing quietly in the background. A favorite and useful possession was given
to me by my husband, Howard. The Sharper Image Heart-Sound Soother with
ten sounds. It operates from either electricity or batteries, and has an
automatic 45-minute shut off. I use it a great deal during the day for soothing
and relaxing background music.
June 1995 through October 1995, I was doing research almost non-stop on
the Internet, plus library, and telephoning the National Institute of Health,
National Cancer Institute, American Cancer Society, local hospitals, and anyone
else I could come up with who might have more information on Carcinoid. Finally
I felt I was almost on over-load, and since Carcinoid is slow growing thought I
could take a break for a few months.
October 2, 1995, my mother (age 86), in Missouri, had a heart attack and died
quite unexpectedly at home. In August 1995 she had a mastectomy when it was
found she had breast cancer, she then went on Tamoxifen. She and I were the
FIRST people we had ever heard of in her family who had cancer. Mom quipped, at
the time, that possibly others did have cancer, or would have developed cancer
they just hadn't lived as long as she had. We feel she may also have had
Carcinoid, but there will never be anyway to be sure. She was diagnosed with
colitis and IBD/S while still in her 30's, and had intestinal difficulties all
of her life; PLUS she suffered from sweats, did not tolerate heat, and had the
face, neck, chest RED FLUSHES, from that time on through the end of her life
In our Holiday/Christmas letter of 1994, we had told everyone we would be
holding an open-house on Sunday, December 31, 1995, for our 25th wedding
anniversary. I stopped research to get ready for out-of-state company and
our open-house. 100 people helped us celebrate our wonderful 25 years
together. The day and holiday season were memorable in every way.
quite a year for me and all of my family -- my cancer diagnosis, the death of
my mother, and our 25th anniversary.
July 1995 until mid-March 1996 I continued with the regional cancer
center in Tucson, AZ, doing routine testing: 5-HIAA, serotonin serum and usual
blood panels. They did not tell me of the restricted diet necessary a few
days before the 5 HIAA and serotonin blood serum tests. I learned of the
restrictions through a book and asked about them. I was told that since I
had abnormal readings not following the diet before hand didn't matter.
This did not build my confidence in them. I did not care for this facility. It
was difficult to obtain simple test results without MANY phone calls and
March 1996 I returned to my surgeon and a local oncologist (whom I had met while
in the hospital after my surgery), both in Mesa, AZ, and felt that I was in good
Spring and summer of 1996 we did: basic CT of abdomen (I was told
the liver looked better than the last CT); upper and lower GIs with small
bowel follow-through; small bowel enteroclysis again in response to pain,
all was normal; chest x-rays; another CT of abdomen and pelvis; and
several ultrasounds of pelvis. A soft tissue mass in the lower right
quadrant that in 1995 was 2 x 3 cm. had grown to 3 x 8 cm. in 1996. I was
told to assume it was Carcinoid, but until need surgery again, do nothing,
that I have a chronic disease. I am not sure why I accepted this answer,
except due to all that was going on in getting ready for the wedding, and
feeling fairly well. This continued to nag away at the back of my brain
through, making me somewhat uneasy about my care.
July 1995 through April 1997, with my visits to three different
oncologists (in two cities), I had the same "complaints". Pain in my
lower right quadrant (ALL of the time), and sometime up and down the right side,
ribs both front and back, in area of kidney and liver, but not all of the time.
I was told I probably had adhesions but we couldn't be sure until the next
surgery, this is a chronic illness. So I tried learning to identify adhesion
pain and to live with the discomfort/ache/pains). In addition I always had
some diarrhea (tried several meds but none satisfactory -- diarrhea was
preferable to very severe cramping), and the constant severe fatigue and
weakness, plus once I gained most of my weight back I was never ever hungry
or had any interest in food. I did not lose weight, maintaining the weight I
gained back after surgery though. I was told many times to "learn to live
with it". No, I did not care to accept that passive role!
During late summer 1996 I had the good fortune to locate Jean Mickelson,
founder and director of The National Carcinoid Support Group (closed operations
summer of 2002). I called Jean and talked with her -- what a great life-line.
Jean provided me with names and email addresses of others (around the world)
with Carcinoid. Since then I have formed some cherished on-line friendships
with others. Jean did tell me there are a few wonderful doctors who are
Carcinoid experts/researchers. At that time, I had just changed doctors, was
getting ready for a wedding, and felt in good hands, so did not contact any of
the ones I heard mentioned by various people I had contact with on-line or on
When I saw my internist for routine annual check-up in October 1996, I
asked him for a small prescription of Tylenol 3, as I was thinking the pain
could be adding to my fatigue, he agreed, plus with our youngest daughters
wedding coming up I thought it was time to take a few pain pills. Tylenol 3
pretty well took care of the diarrhea problem, not totally, but a large
improvement and livable. (This doctor "retired" and I see a wonderful female
My routine January 1997 doctors appointment came and went. Believe I was too
exhausted to think straight, I had the same complaints and received the same
answers. During the next few months it became more and more apparent to me that
I should check with one or two of the Carcinoid experts.
April 27, 1997,
I put up my web page now at:
http://www.carcinoidinfo.info. I have tried to provide information for
leading a full and active life while dealing with Carcinoid; and have links to
information I wish had been on-line when I started my Carcinoid research late
May 1995. At that time there was very little information on-line and the
research papers were mostly done before the FDA approved Sandostatin's use.
Then I kept finding information that I would be dead within 2 to 5 years of
diagnosis and I was NOT willing to accept that. I consider myself a
"Advocate for Carcinoid Cancer Awareness". I am happy to be able to assist
others in their quest for information and understanding, not only from my page,
but from the many links available -- due to my years of research which shall
continue. My plans are to keep adding additional information to the page, plus
links, not only about Carcinoid and Breast Cancers, Diabetes, but Bluegrass
music, books, humor, travel, current affairs/issues, government, Arizona for
visitors, spiritual support, medical quacks (how to tell), religion, local
support groups, how to check and see if a story is an "urban legend" or if a
virus message is real or a hoax, Carcinoid medical conferences (for patients),
polls and studies, plus other things of interest. When this homepage / web site
was eight years old, April 27, 2005, there had been 186,885 "hits" or "visits"
to my homepage, I try to answer everyone within a week of receiving the e-mail
or guest book note - if I am at home.
In April 1997, I telephoned the office of one of the experts and asked
how to send records for reevaluation, I was connected with the doctor. We
talked, and he asked me to read conclusions from various test reports, and made
some suggestions. I was favorably impressed with him, as has everyone who has
dealt with him.
The next day I emailed some questions to one of the other experts (Dr.
Richard R. P. Warner). He called me the next evening, I was very impressed
with him, his manner and the general Carcinoid information he gave me (not case
specific). I asked that he reevaluate my case and make recommendations. I
then spent two days going to the hospital and various offices to obtain ALL of
my films (OctreoScan, CTs, ultrasounds, pathology slides and everything) plus
additional records -- most of which I already had. I shipped 14 pounds of
films / reports FedEx to this wonderful caring doctor. He, or someone from
his office, were in contact with me almost daily, and sometimes several times
each day. He and the others there could not be more caring, or nicer! He made
his recommendations, and spoke with an oncologist, here in Arizona, who would
work with him. I made an appointment to meet this new doctor in mid-June 1997.
For a few days in June 1997, I felt "anger" at the two year delay in
starting treatment, think I was entitled to a few days of that. I have always
been highly adaptable and optimistic! But within a few days all of my energy
was again directed towards the future, and being used to follow all directions
regarding my long-term treatment.
I've always been a firm believer that nothing stays the same -- be it a
marriage, a club, a business, a relationship, or a professional position --
things either back-slide and get worse, or they go forward, grow and improve!
My attitude has always been to continue to grow, learn, and improve !
In mid-June 1997, my husband and I met with this new oncologist , we were
quite favorably impressed with her, the knowledge she had, her keen
intelligence, and her manner in general. In one hour and fifteen minutes of her
undivided time/attention, she relayed more Carcinoid Cancer and Carcinoid
Syndrome information to us than I had previously heard from three (3) other
Arizona oncologists during office visits over the past two (2) years.
Thanks to the Internet I already knew most of the information. It surely would
have been better if I could have found Dr. Richard Warner, who is in private
practice (and is Director of the Carcinoid Cancer Foundation in New York City),
and teaches at Mt. Sinai School of Medicine, when I was first diagnosed instead
of having to find all of the basic information through my own research. (Be
sure to see the homepage of the Carcinoid Cancer Foundation for up-to-date
I had new CTs of abdomen and pelvis, 6 June 1997. The telephone report
told me that my liver appeared about the same - still have "spots", but no real
change from a year ago.
In 1995 I had a small tissue mass in the lower right quadrant (LRQ) of my
abdomen (2 x 3 cm.), by 1996 the same tissue mass in the LRQ had
increased in size (3 x 8 cm.), the telephone report from the
16 June 1997,
CT told me that now that small tissue mass was GONE! That was very good
news! It appeared that my continued pain (off and on, more on than off though)
may have been from adhesions. Due to the results of these new CTs and other
factors my new oncologist recommended sitting tight for now and doing nothing
special. She said we would re-do the 24-hour urine 5-HIAA and blood serum tests
for Serotonin before the end of the year and go from there. (Here was
"wait and see" again, a big surprise!)
During the summer of 1997 I obtained a printed copy of the June 1997
CTs and was quite dismayed to find the report was in error! The
radiologist indicated on the report "the uterus demonstrates normal size and
density." Surprise, my uterus was removed in 1973! This does not make one
confident in certain laboratories and certain doctors. The rest of the report
My husband, Howard, and I spent the last two weeks of September 1997 on
Kauai, Hawaii. I had to take codeine daily for pain, but we had a
wonderful trip. We enjoyed the beaches, waterfalls, nature in general, hikes
and etc. This was our first trip to Hawaii.
Nov. 1997, I had a follow-up appointment with the new oncologist. She
was not concerned about the error on the CT report, did not want to do any of
the testing that Dr. Warner recommended and wanted to take the old standard
(but out-of-date) "wait and see" attitude. I found this very disturbing! I
have not seen her since this appointment!
Nov. 1997, I had a physical with a, new to me, wonderful female
internist. (Our former internist "retired".) This new doctor picked up on the CT
report (without me pointing it out to her) and ordered annual mammogram,
plus ultrasounds and CTs, 24-hour urine 5-HIAA test,
serotonin blood and other blood tests. She was eager to read more
about, and learn more about Carcinoid -- and she has retained this high
interest! This internist has a very busy practice, it is difficult to get an
appointment, but she is wonderful and so interested in learning about carcinoid
(and other new developments in the medical field), and very helpful with
everything. I feel fortunate to have her on my medical team!
In Dec. 1997 I had a surprise emergency six day hospitalization due to
partial bowel blockage. At this time I saw four doctors. My local
oncologist ordered urine (5-HIAA), blood tests and a new
nuclear OctreoScan with Indium-111. We talked and have been working
together with Dr. Warner ever since!
Due to all that had been happening and NOT happening I felt I would not be
totally happy or satisfied until I was doing some kind of active treatment for
my Carcinoid and until I met with one of the world's leading experts in
Carcinoid. Therefore I decided to go to New York City to consult, in
person, with Dr. Richard R. P. Warner, who has worked with Carcinoid for 40
years. He is a world leader in the diagnosis and treatment of Carcinoid! My
local oncologist was totally supportive.
February 1998, I spent (11) eleven very productive days in New York
City. My best friend from college days, who now lives in Mass., joined me for
the stay and we enjoyed catching up on old and current times in between the
visits to Dr. Warner. I again assembled ALL records, and films for Dr. Warner's
While in NYC, Dr.Warner did upper GI and small bowel x-ray (since they were
not done during by Dec. 1997 hospitalization); esophagogastroduodenoscopy; and
multiple urine and blood tests. I could not be more pleased with Dr. Warner,
his wonderful wife Monica, and his whole staff -- what caring, concerned, kind
people! Dr. Warner had suggestions for my treatment, which we started while
I was in NYC, and Dr. Warner spoke with my local oncologist (Dr. Jack
Cavalcant). I am very pleased with Dr. Warner's protocols for, and management
of my case -- everyone is different, and what is right for one Carcinoid patient
is not correct for another person! Without Dr. Cavalcant it would not have been
possible to easily do these protocols recommended by Dr. Warner. Dr.
Cavalcant has been, and is wonderful!
We are individuals and all treatment must be tailored individually.
Therefore do not assume what I am doing is correct for you, only you and your
doctor (consulting with one of the experts in Carcinoid) can decide that.
May 7, 1998,
I completed 12 (twelve) weeks of low-dose chemotherapy
using: Leucovorin, 5-FU (Fluorouracil) and Streptozotocin. I also gave
myself injections with Sandostatin (octreotide) twice a day (every 12 hours).
Later in May, this was increased to three injections daily (every eight hours),
and I could tell an improvement in my energy level and how I felt almost
How was the chemo that I've described above? Easy! Before getting the
chemo I would take one Zofran tablet and take one again a few hours
later. I never was sick, was not dizzy, did not vomit, did not lose any hair.
I was somewhat tired the next day, but over-all it was very easy and things
went very well. The hardest part was going to the lab before chemo for
blood tests. I have always had very small veins and now I learn as we age they
get smaller. I am a challenge for the phlebotomist, and also the oncological
During May and early June 1998 we reevaluated my case. I had
mammograms, ultrasounds (of breast), CTs of abdomen and pelvis,
24-hour urine test for 5-HIAA, blood tests for Chromogranin-A,
Serotonin, Tryptophan, liver function, kidney function,
and various panels, and a nuclear OctreoScan using Indium-111. My
local doctor (Dr. Jack Cavalcant) spoke with Dr. Richard Warner after all of the
results were in. The good news was two lesions in my liver and lesion in
my abdomen had remained stable. The not so good news was one lesion in
my liver had increased in size somewhat since the last testing done in November
and December 1997. We then increased the amount of Sandostatin that I
injected every eight hours.
September 3, 1998, I began a new, to me, chemo protocol for my kind of
Carcinoid as directed by Dr. Warner (and administered by Dr. Cavalcant's
office). First I received Decadron and Zofran (anti-nausea drugs)
via IV, then Dacarbazine (DTIC) also by IV. This protocol was
administered approximately every four weeks, and we continued for seven
How did I feel on the DTIC protocol? GREAT! I no longer needed to take
codeine once or twice each day for pain. My ribs, liver, kidney areas no longer
had pain! I no longer had pain in the LRQ of abdomen (surgery site), once in
awhile I would have a small ache in that area, but not pain. The Sandostatin
took care of my pain, controls diarrhea and gave me back the energy that I
missed so terribly! For me, Sandostatin is a "miracle" drug!
Side effects of the DTIC. The main side effect of the DTIC was that after
the chemo I did not sleep that evening - I was "wired" and up, wide-awake all
night. This only happened the one night, then it was back to normal sleeping.
I got a lot of work done on the computer when I was up all night and the next
day. I was very careful to use a daily sun screen. I forgot to put on sun
screen before I had chemo in Jan. 1999. The minute I stepped out of the
doctors office and into the late afternoon sun, my face and whole head hurt and
burned! I got in the car and turned on the A/C, after about five minutes I was
again fairly comfortable. I drove to a store, got out of the car (approx. 30
minutes after end of the chemo) and my face and whole head again hurt and
burned! Out of the sun it was o-k. This did not happen the next day. In
Feb. 1999, I wore my usual sun screen, after the chemo when I walked out
into the sun I got some burning on the face and head, but not bad like in Jan.
It ended when I got out of the sun, and as before did NOT continue the next
day. It is a good idea to always wear sun screen, and do not forget the tops of
the ears and the backs of the hands.
Due to my very poor, tiny, veins and knowing I will need to have blood drawn
frequently for the rest of my life, we decided, along with my doctors, that I
should have a porta-catheter.
October 22, 1998, a Groshong central line porta catheter was implanted in my
chest under general anesthesia. My surgeon inserted needle, and capped
tubing so we could use the catheter the next day WITHOUT pain - very thoughtful
of him! My surgeon and anesthesiologist were both aware of Carcinoid Crisis and
prepared in the event that happened -- it didn't. Using the new porta catheter
the next day was wonderful! What a great way to draw blood and receive chemo
and anything usually done via IV, this is so much easier and faster. The
oncological nurses no longer dread seeing my name on their list of patients for
the day! The same team removed this porta catheter and implanted a new one
December 6, 2002.
In mid-March 1999 we did CT of abdomen and pelvis, x-ray of spine,
nuclear bone scan, 24 hour urine 5-HIAA, serotonin serum, serotonin whole blood,
chromogranin-A and tryptophan testing. The bone scan was negative and shall
be used as a baseline. Over-all things are going well, BUT the DTIC did not
stop the growth of one liver tumor, so we discontinued the DTIC monthly
protocol. I am still glad that we tried this, and may try other mixes of chemo
in future years -- we did surgery instead in Oct. 1999.
Dr. Warner, Dr. Cavalcant , and I talked. It was decided I should go on
Interferon Alfa 2-b, three injections weekly, along with my Sandostatin LAR
injection every four weeks. I did 3 daily Sandostatin injections before the
new Long Acting Release (LAR) become available -- I switched to the LAR
injections every four weeks starting in March 1999. Due to our son,
Scott's, large wedding in Florida in mid-May 1999 it was decided I would not go
on the Interferon Alfa 2-b until our return from Florida.
May 21, 1999 I had my first injection of 1.5 million units of
Interferon-Alfa 2-b in my oncologist's office. Shortly after the injection
I did feel somewhat lightheaded and weak. Took Tylenol (1,000 mg at a time)
several times that day and for several more days. Came home from the doctor's
office and nothing more for hours!
Side effects of Interferon Alfa 2-b the first couple of weeks.
Finally a gradual start of muscle/body ache until whole body affected --
compared to other things I've had it was mild, like a VERY light case of the
flu. When Howard returned from the east coast that Fri. night, instead of the
house being about 72 degrees he found the both AC/heat pumps set on 80, me in
sweats under a pile of blankets -- hard chills for close to 3 hours. After
chills temp went to 102 for awhile. The next day I got up and felt better than
had been advised I would. I had been sure I would miss a lot of the ill effects
of this drug, and have. Sat. I was weak, tired, some body/muscle ache, head
ache, and somewhat dizzy/light headed. Had an appt. in late afternoon, so had
Howard drive me (RARE) as I felt a bit "off" or "spacey" or "fuzzy headed" but
over-all o-k. Sunday same as before, somewhat light headed, spacey, fuzzy
headed, bit of body/muscle ache, tired, weak, but mild compared to some
reports. Monday same as before -- really weak, no energy, headache, fuzzy,
slight body/muscle ache --- o-k really except for the "fatigue". Monday
evening did my second injection with the Interferon Alpha 2b, NO chills, NO
temp, just the body/muscle ache (mild), tired, weak, light-headed, slightly
fuzzy headed or spacey on Tuesday and Wednesday. Every day things got BETTER!
I did six injections of Interferon-Alfa 2-b at the 1.5 million unit level, then
upped the dose to 3.0 million units starting Friday June 4, 1999.
Howard and I enjoyed dinner at OutBack Steak House before I gave myself the
doubled dose of Interferon Alfa 2b. Unlike the first time (with half the
dose) I did NOT chill or have fever! I know that a positive attitude cannot
overcome all, but it can overcome a great deal and makes life much easier!
The next day I had a light headache, and full body/muscle aches (but not
terrible), even my finger tips ached! All of the medical professionals told me
the fatigue and all eases over time, and it has!
I have continued giving myself injections of 3.0 million units Interferon Alfa
2-b three times weekly through the end of 2002, and switched to the one
injection per week (Peg Intron-A) January 2003. I don't even know I've
had an injection except for not always having the level of energy I had gotten
back from the Sandostatin, feeling weak some of the time -- and I do feel the
need for more sleep, I'm a "night owl", so instead of 5, 6 or 7 hours per night,
I found the first year that I was sleeping 8, 9 or 10 hours -- otherwise all
There is good information about using both Sandostatin and Interferon Alfa
2-b (and MANY other things, too) on the web page of the Carcinoid Cancer
Foundation, Inc., see links elsewhere on my web site. It appears that
using Sandostatin and Interferon Alfa 2-b enhance each other and they do much
more good when used together than when used alone.
May 1999 Through the years I have been faithful in having annual
mammograms, and then follow-ups every six months to check certain things. On my
mammogram in mid-May 1999 a problem was discovered.
June 18, 1999 I had a surgical biopsy - lumpectomy of my right breast,
the pathology report said I had malignant Infiltrating Ductal Carcinoma
(IDC) breast cancer. I am fortunate this was found "early". No one
could feel it, as the tumor was only 0.8 CM which is considered "tiny". Again I
started doing research on The Internet, plus reading books, and talking with
friends (including nurses) familiar with breast cancer. I prepared my list of
questions and then had appointments with my surgeon, my oncologist and,
new to us, radiation oncologist (where my husband also had a number of
questions he asked). I spoke with Dr. Warner twice by telephone, regarding
all of this, and find it hard to express how wonderful it is to be able to get
the best information and good words from him and his staff -- they couldn't be
more wonderful, or more loving and caring for all of us with carcinoid and
people in general! Dr. Warner was in total agreement with the treatment
recommended by Dr. Cavalcant. (Dr. Cavalcant also has a wonderful staff in
his office - shared with three other oncologists - everyone is always nice and
they are so very busy!)
In late June 1999 I ceased Premarin (hormone replacement), which I had
taken daily since the fall of 1987. On July 6, 1999 I began taking 10mg
Tamoxifen, for the breast cancer, and foresee being on this drug for 5 or
Besides the basic pathology tests on the breast tumor/tissue removed, I wanted
more info. So, had "DNA Histogram"/"Flow Cytometry" done. The DNA
Index/Ploidy was 1.0/Diploid, which is prognostic category favorable,
and S-Phase Fraction test which was 1.7 %, also prognostic category
favorable. S-Phase greater than 10% are generally associated with worse
July 19, 1999 I had my first radiation treatment for
Infiltrating Ductal Carcinoma (IDC) breast cancer. We did 28
radiation treatments in four positions (right breast and lymph nodes), then 5
"boost" radiation treatments of the surgery/lump site for a total of 33
radiation treatments, the last one was on September 14, 1999. Weekly
I went to my local oncologist's office where they accessed my "port" for blood
tests to follow my various blood cell counts.
I remained on Sandostatin LAR
and Interferon Alpha 2-b throughout the weeks of radiation. I had been told
that the fatigue builds from radiation, and that was true, but it didn't hit me
with full force until the final week, then I had almost total lack of any energy
to move. I was advised it would take three to four months to regain my strength
and get over the fatigue. By Oct. 11, 1999 four weeks since we
completed radiation, and I felt as though I had 1/2 to 3/4 of my energy back and
the fatigue was much less. I was very fortunate, I did not have burning or
blistering and got along very well with the radiation.
I had a wonderful support team of local friends! They made a schedule
for someone to take me to every radiation treatment, and to every doctor
appointment! I thought I could take myself at first, but wonderful friends
wanted to help, so they did and it was great! A total of 13 friends took me to
and from radiation treatments and three additional friends did other things for
me. We are fortunate to live about 10 to 15 minutes away from my doctors
offices, and the hospital where I had the radiation. Like everything else I did
not expect major problems, and expected whatever minor discomforts and problems
that would occur, that I could deal with them in good humor, and did!
How do we manage TWO kinds of cancer? Getting the diagnosis for a SECOND
totally different kind of cancer is no picnic! But, after having one diagnosis
and feeling very comfortable with handling it, getting the second one was not a
huge shock, and not too depressing. I believe I only had one "down" day --
although being an optimist doesn't mean that I am not a realist! Don't get me
wrong, my husband (Howard) and I were NOT happy about this, but more resigned,
and were ready to do battle immediately. I have been very aggressive in
learning about and fighting my Carcinoid -- therefore I was also ready to learn
more about breast cancer and be aggressive in fighting it, too! I was not
pleased for the need to learn about a second kind of cancer, but I am not the
only one with Carcinoid and a second kind of cancer - there are others.
September 16, 1999 After completing radiation it was time to do a new
echocardiogram (to compare to the one done in 1995), and new abd and
pelvic CTs. Good news, my liver tumors appeared stable. Urine and blood
tests, although not in the normal range, were lower than in the past, so the
combination of Sandostatin and Interferon Alfa 2-b is working (holding down the
production of Serotonin). But, there was growth in the ovaries and we again
consulted with several doctors. Until we did surgery (October 13, 1999)
we did not know if these were cysts on my ovaries, or Carcinoid tumors or
Ovarian tumors. I really did not want to have the need to learn about, and
deal with, a third kind of cancer, but if it had turned out that way, I would
have done whatever was necessary!
The Arizona Republic Newspaper, Phoenix, AZ, published a nice
color picture of me (by Cheryl Evans), and an article about Carcinoid by Peter
Ortiz on Thursday, October 7, 1999, in their Tempe, Mesa, and Chandler
editions. The next week the picture and article appeared in the Scottsdale
edition and several Phoenix editions. Above my picture it says "Carcinoid
cancer Web site an inspiration", the caption under my picture reads "Susan L.
Anderson was misdiagnosed from 1987 to 1995 by several doctors who could not
explain why she constantly was doubled over in pain. Finally, carcinoid cancer
was diagnosed. Anderson created her own Web site on the cancer. It's used as a
reference guide and for inspiration." Under that headline it reads "Woman turns
pain to gain". The article is no longer on the newspaper's web site. If you
would like to see the full article (we have scanned it into our computer) e-mail
me and I will forward it to you as a jpeg attachment. Click on colored line
below to see the condensed version.
Carcinoid article about
web site and Susan in the 10/07/99 Arizona Republic
By Oct. 11, 1999 four weeks since we completed radiation, and I felt as
though I had 1/2 to 3/4 of my energy back and the fatigue was much less. I was
very fortunate, I did not have burning or blistering and got along very well
with the radiation.
October 13, 1999, FIVE surgeons in the operating room worked on me, and
we couldn't be more happy with the results which were even better than we had
allowed ourselves to hope for. The two lead surgeons were: Dr. Lawrence Koep
and Dr. Matthew Borst, both of whom spoke with Dr. Warner in NYC via phone
before they did my surgery. The removed ALL Carcinoid that they could see and/or
feel. What they did:
Removed two tumors from my liver and did a partial liver resection of segments
5 & 6 (right lobe of liver);
Lysis of adhesions involving the omentum, small bowel, large bowel and
bilateral adnexa (plus around the liver and bile duct -- the adhesions were everywhere in my abdomen and pelvis);
Full exploratory laparotomy (checked complete length of small intestine and
large intestines for Carcinoid);
Bilateral salpingo-oophorectomy (removed both fallopian tubes and ovaries);
Removed nodules from the descending colon, bladder serosa
and cul-de-sac pertioneum;
Blood transfusions (I am A Negative), and 23 hours of great care in the ICU.
The very GOOD NEWS was in the final pathology report -
ALL things that
were removed were "Metastatic Carcinoid Tumor", nothing else: - Right
tube and ovary (encased within a tumor), - Left ovary and tube, - Descending
colon nodule, - Cul-de-sac nodule, - Peritoneal nodule, - Liver mass (two
Dr. Warner had the hospital in Phoenix send him a pathology slide
(without dye) from the ovary tumor for him to take to his pathology lab for
testing in New York City re: MIB-1 Ki-67 or Cell Cycle Analysis,
the results were: "favorable 2" and of course carcinoid and nothing else.
October 19, 1999 I was released from the hospital after six days. I
regained my color rapidly and my optimistic "can do" attitude immediately, but
the energy took a bit longer! Remember I only completed radiation in
mid-September 1999 and many people say it takes 6 to 12 months to regain energy
and get over the fatigue from radiation treatments. I took it easy for almost a
month after I cam home from the hospital, a wonderful neighbor went for the mail
and brought it in to me each afternoon, got the three daily newspapers and did
many kind things for me. My husband, of course, had to work, but he did the
cooking, laundry, grocery shopping and etc.
In mid-November 1999
I was one of four people interviewed, via e-mail and
telephone, for an article on "rare cancers". The article "Celebrity's Death
Spurs Interest in Rare Cancers" by Tom Reynolds was published in the
Journal of the National Cancer Institute, Vol. 91, No. 24, 2070-2071,
December 15, 1999. The death of the football player, Walter Payton,
prompted the interest in rare cancers.
My husband and I flew to California and then took a boat to Catalina Island, CA,
for ten days over Thanksgiving 1999 -- that was very restful and enjoyable. I
did not have fatigue as a side effect of Interferon Alfa 2-b at that time, but
was still weak. Since the spring of 1999 I had lost 25 pounds, and I became
anorexic (total lack of appetite or any interest in food). I have always
eaten to live, NOT lived to eat as some people, so lack of appetite doesn't
really distress me.
Although I did not have all of my energy back things
became busy. I did my routine (twice each year) mammograms,
abdomen and pelvis which showed a nodule at the base of my lungs.
I chose to remain on Sandostatin LAR and Interferon Alfa 2-b and wait until
the next CTs to decide for active, if any was needed. It was a busy
Christmas season as we had company from Florida -- our son Scott, his new wife,
plus her parents and two college age brothers.
February 2000 we did an
OctreoScan (nuclear) and it indicated no
evidence of carcinoid tumor in the liver, abdomen or pelvis, BUT, faint
abnormality elsewhere. We also did colonscopy, with colon biopsy,
and removed several polyps, fortunately the pathology report said no evidence of
cancer, but redo again within three years. I then made a quick weeks trip to
England with my husband, and said I would just forget the nodule and wait
until the next CTs to see how things were doing.
In May 2000 we did the testing that is part of every persons routine who
has Carcinoid. 24-hour 5-HIAA urine test, Serotonin Serum,
Serotonin Whole Blood, Tryptophan and Chromograin-A, in
addition to usual CBC (complete blood count), Hepatic Profile
a few other tests. For the FIRST time all tests (except
Chromogranin-A) were in the "normal" range! What does this mean? Well --
there is some type of tumor activity in my body (Chromogranin-A shows that), but
it is too small to image at this time, possibly grain of rice size.
Also, this indicated that the AGGRESSIVE treatment with Sandostatin LAR and
Interferon Alfa -2b (now Peg Intron-A) is working to keep things STABLE within
Early June 2000 we did routine (every six months) mammogram, all
appears well. We also did CTs of chest, abdomen and pelvis. The good
news was there is no longer evidence of the nodule seem at the base of my lungs
in Dec. 1999, plus no evidence of recurrent mass or obstruction! There was no
cancer large enough to image!
June 2000 Feeling well, being stable, having no pain, no diarrhea and my
energy level back due to surgery and our aggressive treatment made our first 14 night/15 day cruise to and from Alaska a real pleasure. We saw the
scenery and wildlife via: cruise ship, rubber raft, jet boat, small boats,
mini-buses, helicopters, float planes, and walking -- it was all marvelous, go
go go go, good informative, educational lectures, good food, and we had a
My doctors (Dr. Warner, Dr. Cavalcant, Dr.
Borst, and Dr. Levitt) and I believe the aggressive treatment I am on will keep
tumors in check/stable for many years to come -- plus there are some new
things in the pipeline (in Europe) that will become available here in the USA to
fight Carcinoid with in the next several years. Who knows what developments
will happen in the next five years and ten years!
Late June 2000
With all the good news there is bound to be a bit that isn't quite a good. For
years doctors have told me that I had such great Cholesterol and Triglyceride
numbers others would kill to have good numbers like mine. Had my usual
monthly CBC, and my wonderful internist also requested the Lipid Panel,
Hemoglobin A1c, and TSH (thyroid stimulating hormone). Things had
changed somewhat. I had abnormal (high) readings for Cholesterol,
Triglyceride, HDL Cholesterol, and TSH (thyroid stimulating hormone). I
started on medication for the very underactive thyroid. The higher the
TSH is above normal range the greater the deficit (underactive), which is called
hypothyroidism. The hypothyroidism also causes the cholesterol and
triglycerides to rise! We believe the imbalance in my thyroid is being
caused by taking Interferon Alfa 2-b, and Tamoxifen. Since the Sandostatin LAR
and Interferon Alfa 2-b are holding the carcinoid very stable within my body, I
do not mind having to treat the thyroid in order to remain on this very good,
for me, treatment combination. Looks like there is always something new
to research and learn about. Dec. 2000 thyroid tests back in normal range,
but I shall stay on medication for life.
August 8, 2000, I (Susan) had a letter to the editor published in
USA Today (newspaper). The title of my letter was "Ford's stroke
highlights fears over diagnosis". For the first time, that we know of,
"carcinoid cancer" and "Carcinoid Cancer Foundation" appeared in print in
USA Today (in my letter). August 11, 2000, a follow-up letter,
by Glenn McGinnis, titled "Diagnosis awareness" was printed also talking of the
earlier letter and "carcinoid cancer". Two more follow-up letters, "Correct
diagnosis" by Pamela S. Cole, and "Carcinoid a 'brutal killer'" by Elizabeth
Mason were published in USA Today on August 23, 2000.
Carcinoid cancer was again mentioned in two letters by me (Susan) - "Sympathy
for McCain" August 20, 2000, in The Arizona Republic; and
"John McCain: A U.S. role model" in USA Today on August 21,
2000. We are very grateful to USA Today and The Arizona
Republic for publishing these "letters to the editor" and getting the
word "carcinoid" in print.
Due to chest "pain" I was in the hospital for four days, many heart tests were
run and I got a clean bill of health -- heart wise.
Thyroid tests back in normal range, but I shall stay on medication for life.
2001 - 2002 - 2003 - 2004 - 2005 - 2006 - 2007
- 2008 - 2009 - 2010 - 2011 - 2012
----- Please see below
for the 2013 challenge -----
I have remained on the Sandostatin LAR injection every four weeks that I
started in March 1999, after doing, first two and then, three injections daily
myself starting in February 1998. I started three times per week self
injections of Interferon Alfa 2-b the end of May 1999, and switched to
the one injection per week (Peg Intron-A) in January 2003. I expect to
remain on both of these drugs for many years. They are working for me and
keeping tumors from growing!
is part of every persons life who is dealing with
Carcinoid, and with an aggressive doctor instead of a "wait and see" do nothing
Once each year we do mammograms and CTs of chest, abdomen and pelvis
(and sometimes neck and head)
with iodine contrast.
Twice each year we do testing of: 24-hour 5-HIAA urine test,
Serotonin Serum, Serotonin Whole Blood, Tryptophan and Chromograin-A, in
addition to usual CBC (complete blood count), Hepatic Profile, Lipid Panel,
Hemoglobin A1c, TSH (thyroid), and any other test my local oncologist or internists
believes is necessary at the time.
Monthly -- since I have a Groshon porta catheter -- we draw blood for a
CBC and flush my port. Removed in 2008.
2013 - Another challenge -- March
received the diagnosis of Chronic Kidney Disease - Stage 4. Since
then have gone on "vacation" from Peg Intron-A for awhile while remaining on
Sandostatin LAR every 28 days. I have had blood transfusions (gave me back
my energy) and we are working, among other things, to prefect the correct diet
mix of diabetic and kidney disease - stage 4.
From the formation during the summer of 2001 I was honored to
serve on the
Board of Directors of a new non-profit group: California Carcinoid
Fighters (CalCF). Since Arizona and Nevada have very small populations we
are welcome in this California group. There is a link to this group under "local
support groups". CalCF had a general meeting, with a medical professional
speaking, every other month. Our major undertaking was the large
Seminar held October 25, 2003 in Santa Ana, CA. Six of the world's
leading clinicians and researchers on carcinoid and neuro- endocrine tumors
spoke: Larry Kvols M.D., Kjell Öberg M.D. (from Sweden), Thomas O'Dorisio
M.D., Rodney Pommier M.D., Richard Warner M.D., and Eugene Woltering M.D. See
my "Conferences - Past" section for information on this conference and earlier ones, also
see "Conference Pictures". Due to the distance and the many things I am
involved with I resigned from the Board of Directions of CalCF November 1, 2003.
I felt quite honored when a major pharmaceutical company invited twelve
Carcinoid activitists from around the USA to a "Patient Support Advisory
Board" meeting. I was quite honored to have been invited to
participate and share what I had learned. We discussed how to best aid those
of us dealing with Carcinoid, plus support groups and conferences. The meeting
took place in New York City in late November 2001.
December 6, 2002, the same surgeon (Dr. Rula) and anesthesiologist who
took care of me October 22, 1998, removed the first Groshong central line porta
catheter they had implanted in my chest under general anesthesia, and replaced
it with a new one. (Removed 2008)
Be sure to see the section "Monitoring Carcinoid"
How To Diagnose and Monitor
Carcinoid (Neuro-Endocrine Tumors): Which tests and How Often? This
information is from three of our leading Carcinoid "experts" and they have given
me permission to post this on my web page -- they are Dr. Lowell Anthony, Dr.
Richard R.P. Warner and Dr. Eugene A. Woltering.
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. I have been a "boat-rocker" since childhood, a "Type A" personality, plus
a type "ESTJ" on the Myers-Briggs Personality Indicator (taken several times),
so I could not just sit still and let my tumors keep growing (no matter how
slowly) and not try to head them off at the pass and hold them in check! This
works for me, it does not work for everyone.
There have never been enough hours in the day for me -- and people say my middle
name should be "organized". Therefore I do not understand anyone who says they
are "bored". I do not know how many years I will have my current level of life
quality -- being pain-free and having energy -- but I am trying to make the most
of each and every day while it lasts! I expect decades of life, and fully
expect to die of "old age" and NOT cancer!
April 27, 2010 when my web page was
thirteen years old there had been 296,548 "hits" or "visits" to my
homepage, I try to answer everyone within a week of receiving the e-mail,
if I am at home. I put my page on the Internet April 27, 1997.
2004, I was diagnosed with Type 2 Diabetes,
so now have an additional
regarding learning about a disease and managing it.
The Carcinoid Cancer Foundation, Inc. (CCF) began their
new weekly blog in the spring of 2010. To visit the site check on
I was honored when the CCF featured a story about me on their BLOG on May 1,
2010, titled: "13th Anniversary of First Carcinoid Patient Website: Kudos to
The following is mostly current as April 1, 2015.
My Carcinoid is STABLE thanks to
good doctors and aggressive treatment; and I have my Type 2 Diabetes almost
under control. Although I do not have the number of commitments that I have had
in the past, I still have a "full plate"!
Besides hosting the open-to-all acoustic Bluegrass music jam sessions in our
home one evening each week (31 + years), I keep names, addresses and info
regarding Bluegrass, answering frequent phone calls, and sending emails with
additional information regarding the music; (AFTER 35 years of weekly jams
sessions we ceased);
I keep all of the records for two book discussion groups on my computer;
I lead at least one book discussion in each group and host at least one
meeting (often more than one) of each group yearly;
I read two daily newspapers (USA Today and The Arizona Republic);
(no more Tribune as of Jan. 2009)
Keep up with weekly magazines (Business Week, Newsweek, Time, This Week);
Try to read, or at least skim, a multitude of monthly publications;
Try to stay current answering Carcinoid e-mail, and a great deal of other
e-mail from family, friends (both known and friends without faces) -- seems
that I am always behind with this, but I enjoy it very much;
SEE BELOW - I can no longer keep up with
Take care of my husband and home;
Read for pleasure;
For 31 1/2 years hosted WEEKLY Bluegrass music jam
sessions in our home, In Jan. 2009 changed to once per month;
Read for additional, and new, information regarding
Research, mostly on the Internet, for my types of cancer - 1. Carcinoid, 2.
IDC Breast, 3. Type 2 Diabetes;
Pursue many other interests and things that come up both business and personal
Sort pictures, letters and do bits and pieces of work with my
My husband and I both enjoy camping, travel, concerts, plays, and have a
number of other interests.
When I was first diagnosed in May 1995 I read many books - several made good
suggestions on living our daily lives. Ask ourselves
if we only had one year to
live, where would we live, what would we do? Do we have negative people in our
lives that have a bad effect on us? What do we do for pleasure, what have we
been putting off? Do we do anything to pamper ourselves? In regard to the
questions I was fortunate. When my husband and I moved from the Washington,
D.C. area to Arizona in 1983, we knew it was where we wanted to spend the rest
of our lives.
Before diagnosis, in Arizona, I had already removed several negative people from
our lives (life is too short to put up with depressing or rude behavior), and we
were already doing things for pleasure that we wanted to do. Since then I have
added massage for what I do to pamper myself -- I started in the summer of 1996,
first weekly, and then every other week. I DID ask Dr. Warner and Dr. Cavalcant
before starting and they gave their o-k. I find the massage relaxing and
something I look forward to very much. Other gals get a manicure or facial.
What works for each individual is what we should do.
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. In July 2010 we went to
Easter Island, Chile, to observe the total solar eclipse (photos on
my TRAVEL page on this web site). We also visited:
Tahiti, Moorea and Bora Bora, French Polynesia
and have a wonderful, but too short, time. In fall 2011 we did back
to back cruises, 11 day Baltic Sea and 19 day Re-Positioning cruise visiting:
Denmark, Sweden, Finland, Russia, Estonia, Norway,
Scotland, Ireland, Northern Ireland, Iceland, Greenland and
Nova Scotia, Canada ending in Fort Lauderdale,
With those trips
I have visited ALL 50
states of the USA, plus Canada, Mexico, France, Switzerland, England, Wales,
Costa Rica, Ecuador, New Zealand, Australia, Brazil, Argentina, Chile, Falkland
Islands, Uruguay, Antartica, French Polynesian, Denmark, Sweden, Finland,
Russia, Estonia, Norway, Scotland, Ireland, Northern Ireland, Iceland and
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.
Now early 2011 I am cutting back on a few things so I may
return to my genealogy and get it all in order and scan photographs, newspaper
articles, autograph books and other things of family interest.
What is right for one person is NOT
correct for another one. But, I believe in "The Golden Rule" and try to
It has been said that Carcinoid is a "looking good cancer" -- meaning most of us
look very healthy, have good color and others can not tell when meeting us that
we have a terminal disease. It has also been said that Carcinoid is one of the
most costly cancers to treat -- because many people with it live for years and /
or decades, thus have long-term treatment costs. I have heard from people who
were diagnosed in the late 1960's and early 1970's which is encouragement for
all of us.
Daily I try to count my blessing , have at least one good "belly laugh" over
humor, review positive poems and good things to think about, and live each day
to its fullest enjoying each and every one! I remain optimistic about my
future! I have no way of knowing how long I will have this level of GOOD
quality life, but my goal is to make the most of it for as long as possible! As
my wonderful husband, Howard, says "each day is a gift"!
your comments are very much appreciated! Spammers infiltrated my guest book
in April 2004 so I have to remove that feature of my web site, sorry
To email me
SunnySusan@Cox.Net (Please see below)
I "Sunny Susan" was invited to write
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
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
05/12/2008 08:40 AM
13th Anniversary of Carcinoid Diagnosis May 10, 1995
04/28/2008 02:50 PM
Neuroendocrine Tumor assistance via web page for 11 + years
AM Book Discussions in Arizona (1983 – 2008)
04/10/2008 11:09 AM:
The Best Things In
* * * * * * * * * * * * * * * * *
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.
"My Carcinoid Story" by Susan Anderson (New Link)
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
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
(list of articles on right side of screen)
What Monica Warner had on the web site … she added
“winner” in May 2009.
* * * * * * * * * * * * * * * * *
Please read last section on this page - below.
Thank you, Susan, 1-26-2009
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.
web site will be 18 years old on April 27, 2015, 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
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
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
CCF - Serving
the carcinoid/NETs patient and medical community for
more than 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 © 1997-2015 Susan L. Anderson. All Rights Reserved.