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

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

Carcinoid Syndrome - Atypical

© Kathy Wright - New Mexico Advocate,
                                          told on July, 2004

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 some relief.

July 2002

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.

August 2002

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.

September 2002

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.

October 2002

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.

When 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, or genetics.

¤ Atypical Carcinoid is faster growing than Typical Carcinoid.

November 2002

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).

¤ Small right posterior costophrenic pulmonary nodule (nodule, lower right lung).

¤ Three hypoechoic foci in the liver (possible liver metastasis).

My left lung, upper lobe, (lobectomy) was removed on November 19, 2002.

March 2003

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.

"Wait 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.

After 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.

October 2003

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.

November 2003

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?

January 2004

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.)

July 2004

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.

My 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.

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Last modified: 07/19/15