The summer of 2002 proved to be the best summer of my life. I went on my
very first Caribbean cruise, swam with the dolphins at the Florida Dolphin
Research Center and was working out at the gym on a daily basis. After being
divorced for almost ten years, I was dating again, had smoked my last
cigarette in the fall of 2001, and was beginning to get my weight back under
control. Life was good except for occasional menopause symptoms which seemed
to be escalating. My “hot flashes” were leaving me soaking with sweat and my
face bright red. I made an appointment with my doctor in hopes of getting
My doctor provided a prescription to help
relieve night sweats, enable me to sleep through the night (I was waking up
every 2-3 hours), and curtail hot flashes. The medication seemed to help but
I began experiencing bouts of diarrhea. I have since learned that:
Carcinoid syndrome is often mistaken for common diseases including irritable
bowel syndrome, peptic ulcer, lupus, asthma, or menopause.
Bronchial carcinoids can produce prolonged flushing that can last from
minutes to hours.
¤ 80% of
patients with carcinoid syndrome develop chronic diarrhea.
I returned to my kindergarten teaching
position. I attributed my growing fatigue to the hot New Mexico summer and
stress of beginning a new school year. After six years, at a school located
many miles from my home, I felt restless, and began to think a change in
environment might renew my enthusiasm for teaching.
I continued to work out, but not daily, as I
didn’t have much stamina. I felt exhausted after teaching all day and had
little energy for the gym. I did, however, enjoy seeing friends there. A
fellow teacher, who was currently teaching at a school close to my home,
urged me to apply for an unfilled position at her school. I thought this was
exactly what I needed. A new school district, a new principal, new
co-workers and a shorter commute would boost my excitement and renew my love
of teaching. I gave her my resume to pass on to her principal.
In New Mexico, teachers are required to test
for tuberculosis when beginning to teach at a new school district. I knew
this certificate would be required if I took a new position. A chest x-ray
is, for me, the only method of obtaining a negative tuberculosis test as I
react to the needle testing. Ten years had passed since my last chest x-ray
so I called my doctor and got it scheduled.
my doctor called to tell me the x-ray was abnormal, I really wasn’t very
concerned. She assured me it wasn’t tuberculosis but could be some type of
scarring from bronchitis and a CAT scan would help determine what the
radiologist was seeing. There was no reason for me to expect cancer. There
was no cancer in my family. I had no lung cancer symptoms. A week later, my
CAT scan confirmed a” problem” in the left lung. Within five days, a lung
biopsy was preformed. The finding was Atypical Carcinoid Cancer which was
confirmed one week later with a PET scan. The bottom fell out of my world.
I now know that:
Carcinoid Cancer does not appear to be caused by smoking, diet, environment,
Atypical Carcinoid is faster growing than Typical Carcinoid.
I moved out of the world of educating children
and into the world of educating myself. Within two weeks I met with a
surgeon, an oncologist, my primary care physician, endured a SPLIT test, a
pulmonary function test, an EKG, numerous blood draws, a mammogram, a pelvic
CAT scan with contrast, and a 5-HIAA test. As the situation seemed to spiral
out of control, depression set in, I cried frequently, worried constantly,
and kept driving from appointment to appointment. I was on automatic pilot
waiting for the conclusion and then it came:
¤ 4 c.m.
left lingular mass (lung tumor, left upper lobe).
right posterior costophrenic pulmonary nodule (nodule, lower right lung).
hypoechoic foci in the liver (possible liver metastasis).
left lung, upper lobe, (lobectomy) was removed on November 19, 2002.
My recovery was slow but I was fortunate to
have a close friend that came and stayed with me. I joined a pulmonary
rehabilitation class which helped me regain lost strength but then I hit a
wall. No one seemed to know, medically, what should be done next.
and see", CAT scan every 4 months, Blood work every 3 months, Maybe the
liver lesions will spread, Maybe you are cured, You have less than 5 years
to live, You will never be cured, You ARE cured, You can live a long time
with this, Get your affairs in order, You are lucky: this is a slow growing
cancer, You are unlucky: you have atypical which spreads fast, You have a
problem in the other lung, You have no problems, You might want to see a
psychiatrist, You are depressed,” the comments went on and on.
hours of research on the internet, chatting with fellow carcinoid survivors,
and contacting The Carcinoid Cancer Foundation in New York, I decided to go
to the University of Iowa to consult with a doctor who has advanced
knowledge of Carcinoid Cancer. He prescribed an Otreotide LAR depot that is
administered every 28 days for treatment of the flushing and diarrhea that
are associated with carcinoid syndrome. Some doctors believe these
injections can help prevent growth and spread of carcinoid tumors. To this
day, I receive an injection every month. It is expected that my gall bladder
will eventually need to be removed as a result of octreotide use.
I attended the Carcinoid Cancer Seminar held
in California expecting to get cutting edge information concerning
Carcinoid. Not only did I get information, but my spirit soared as I got to
meet several survivors who had given me encouragement, inspiration, and
emotional support over the past months.
My right arm became increasing painful in the
shoulder and eventually I could no longer use it. Of course the likely
culprit was metastasis to the bone/shoulder area. A bone scan followed by a
MRI showed a double tear in the rotator cuff but, thankfully, no cancer. I
began physical therapy to regain motion. I also began to wonder if every
time I had pain or a physical problem would I think it was cancer?
The physical therapy was not successful so I
underwent a procedure to “break loose” the shoulder in order to get movement
back. This procedure was followed by two more weeks of therapy. (I still
experience discomfort and a limited range of motion.)
It has been 21 months since I was diagnosed
with Carcinoid cancer and subsequently Carcinoid syndrome. I, like most
cancer patients, have good days and bad days. My monthly Sandostatin
injections do not always control my syndrome and on some days I have break
through symptoms which require additional injections. I have been unable to
return to the classroom as I experience overwhelming fatigue, explosive (and
unpredictable) diarrhea, extreme sweating, flushing, and periodic gut pain.
focus is now on starting a statewide Carcinoid support group for those in
New Mexico that are struggling with this disease. Chemotherapy and radiation
are rarely successful in treating this cancer so many of us do not feel
comfortable in traditional cancer support group meetings. The overall
incidence of carcinoid tumors is 1-2 cases per 100,000 people so we are,
indeed, few in number. It is my hope that heightened awareness of Carcinoid
Cancer will lead to earlier and accurate diagnoses.