Always Trust Your Own Instincts

This is a post by Martha Bair Steinbock, Writer and Editor, Silver Spring, MD

By the year 2013 I knew I was very sick. For several years I have had episodes of extreme abdominal pain with vomiting. At first these episodes we're far apart, so I chose to ignore them. Between episodes I had almost constant diarrhea and pain in many of my joints. And I was tired. Very, very tired. I had been seeing my doctors regularly during this period and complaining about my symptoms and fatigue. In retrospect I think I should have been more dramatic in portraying how miserable I was. But I was stoic. As a working professional woman, I have learned to suppress physical symptoms and to work through periods when I should have really stayed home in bed.

But, I do not believe my doctors saw me as stoic.  To the contrary, they led me to believe that I was a pretty typical middle-age women with minor aches and pains related to emotional distress. Their diagnoses were irritable bowel syndrome and fibromyalgia which they preferred to call chronic pain syndrome. In my heart of hearts I knew they were wrong. Why would a successful wife, mother and executive suddenly develop all these emotionally related illnesses in my late 50s! Since my kids were grown and I was nearing retirement, my life had never been so stress-free. But because of my belief in modern medicine I followed their instructions and saw a therapist and a psychiatrist. The psychiatrist immediately told me he did not believe that my problems were emotionally-based. He gave me a routine psychiatric screening test which showed I was not depressed. But he did prescribe medication which he hoped would help me get back somesome of my previous energy. The psychologist asked me to join a group of women who were suffering from depression. She believed that I might benefit from group therapy. After several sessions I knew I was in the wrong group. When I tried to explain this to her she seemed extremely skeptical and told me that I was trying to take over her group from her. This could have been a scene from a  bad TV comedy except that I was very sick.

In November 2013 I had an extremely bad attack of abdominal pain and vomiting. My husband insisted on going with me to my doctor. He wanted to demand answers for why I was getting sicker and sicker. After going through the routine dialogue with my doctor she got results from a blood test that she had done that day. It showed that my white blood cell count was slightly elevated. Although it was late in the afternoon, she suggested that we do a  a CT scan scan with a barium contrast. I had had a CT scan without contrast before as well as a colonoscopy but both have been normal. This time was different.  The scan showed that I had fluid near my appendix, a partial bowel blockage, and a suspected carcinoid tumor which was causing my small intestine to kink shut. My doctor looked extremely shocked and like she had seen a ghost.

I have read many accounts of people receiving the news that they had a form of cancer. But none of the writers of these accounts had the reaction I did. I was happy to know that I was truly sick and that something physical was causing my problems. I was actually relieved. I was rushed to the hospital and after antibiotics and more tests I was released so that I could have specialized scans that would confirm the presence of octreotide, an indication of carcinoid cancer. As the food in my intestine gradually digested the pain went away. And my doctors, which now included a wonderful surgical team, explained to me that if I didn't eat any fiber I was unlikely to have another blockage prior to surgery. I read everything I could get my hands on about  carcinoid cancer, and hoped and prayed that the cancer was contained within the primary tumor and had not spread beyond my pelvic region. I also decided to change insurance so that I could visit specialists at Memorial Sloan-Kettering in New York.

Since carcinoid cancer is very slow growing, I decided there was very little risk in waiting until January when my new insurance kicked in to have surgery at MSK. My husband and my three daughters as well as some of my grandchildren took up residency with me in New York for the month of January. On January 17 I had surgery which removed my appendix, a 2 .6 CM primary tumor and my ileum , which had been impacted by the tumor. Unfortunately the doctors could not remove all of the cancer cells because they had spread to six of the 23 pelvic lymph nodes they removed, and  had spread  forming tiny implants of cancer cells in many locations around my stomach lining. The good news was that my liver and other organs were free of cancer. This meant  that with proper treatment I could live with this kind of cancer for many years. I know now that living with carcinoid cancer is a challenge, but immediately after surgery and throughout the months and years since I have felt extremely lucky. I do wish that I had trusted my own judgment, complained more aggressively and had sought a second opinion prior to my diagnosis. I hope by writing this blog entry that I will help others listen to their own bodies and insist that their symptoms be taken seriously.