Having a cancer diagnosis is frightening enough. Having a more rare form of cancer adds a layer of isolation to the mix.
I have neuroendocrine tumors known as carcinoid, which have metastasized from my intestines to my liver. There is no cure at this stage, but it is often slow growing.
While this may sound like a late diagnosis, the discovery of my tumors was early for a carcinoid patient. Most carcinoid tumor patients spend several years with intestinal pains, diarrhea, bloating or facial flushing. They go from doctor to doctor for a diagnosis, or from one incorrect diagnosis (such as irritable bowel syndrome or Crohn's disease) to another.
In my case, I felt healthy, with good results on my annual check-up. But because I was older than 50, I decided to get a colonoscopy.
When I woke from that procedure the doctor said he found an interesting nodule, which he sampled. The lab performed some special staining on the tissue sample. It was carcinoid cancer. After a specialized nuclear scan, it was revealed that the tumor cells had metastasized throughout both liver lobes. I was indeed shell shocked, since I felt great.
In short order, I gained some knowledge about this disease. I would need to learn to coexist with carcinoid for a few years. But how?
I wanted to know things from other patients' perspectives. What symptoms did they experience at the various stages of progression? What did they find effective or ineffective in dealing with those issues?
Connecting with others
In 2005, I contacted the Anderson Network at MD Anderson. This cancer support group of more than 1,700 volunteers provides patient-to-patient advice and encouragement.
I was told they had a Network volunteer with carcinoid cancer who would call me. What a blessing it was to get that call and visit with someone who knew what I was talking about.
I have remained in contact with the volunteer over the years, not only through surgeries, monthly injections and a variety of drugs, but also through the sharing of food and travel stories and laughs and hopes.
To learn more about the Anderson Network and other patient programs, attend the New Patient/Family Orientation class. Held Monday through Thursday, 2:00-3:00 p.m., this class provides information about programs and services at MD Anderson.
For more information, call the Patient Education Office at 713-792-7128.