Coping With an Uncommon Cancer

Compounding my fear of having carcinoid syndrome is the fact that few oncologists know how to treat it.

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I try to remain optimistic that my cancer stays manageable and that I will eventually find an oncologist in my city who can give me the specialized care I need.
— Shanta Boles

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In April 2014, I was so sick with uncontrollable vomiting and diarrhea and severe abdominal and chest pain that I had to be hospitalized for 5 days. As I was in my late 20s and in otherwise good health, there was no easy explanation for my symptoms. After I was released from the hospital, my doctor recommended I have a colonoscopy to eliminate some possibilities that could be causing my health problems. During the colonoscopy, the endocrinologist found and removed a polyp, which was later diagnosed as a gastrointestinal carcinoid tumor.

When my primary care physician gave me the diagnosis, he wasn’t even sure whether the diagnosis meant that I had cancer, but he sent me to a cancer center, where it was confirmed that I did, in fact, have carcinoid syndrome. Subsequent tests showed that the cancer had already spread to my liver, cervix, and lungs. Although treatment with octreotide has kept my tumors from growing, I’m still experiencing severe bouts of vomiting and diarrhea and have to take an opioid to control the pain in my chest and abdomen.

But more than my physical symptoms, my main concern is that I’m having difficulty finding an oncologist who specializes in this cancer and can provide me with regular ongoing care. My local medical oncologist knows so little about carcinoid tumors that she only sees me when I need blood or image testing and relies on my medical team at the National Cancer Institute (NCI) to keep track of the progression of my cancer and to prescribe treatment.

Challenge of Traveling for Care

Although I’m grateful to have the expertise of specialists at the NCI overseeing my care, the costs involved in traveling from my home in Huntsville, Alabama, to Bethesda, Maryland, on a regular basis for checkups are so prohibitive that I’ve had to limit my visits to just a few times a year, and I worry that my cancer will become more aggressive while no one is watching and my health will continue to deteriorate. Already facing more than $250,000 in medical debt, the chances that I will be able to continue traveling long distances for my care are slim, and I’m not sure what will happen next.

With few options at my disposal for comprehensive patient care management, I’ve turned to Facebook to learn from the experiences of other survivors of carcinoid syndrome and about potential treatment options. But social media is no substitute for the personalized care of a knowledgeable and trusted oncologist.

Remaining Optimistic

Despite these issues, I try to remain optimistic that my cancer stays manageable and that I will eventually find an oncologist in my city who can give me the specialized care I need. With faith in God that a cure for my cancer will be found as well as my parents and a wonderful husband in my corner and two beautiful young children to raise, I’ll continue to do everything I can to stay ahead of this cancer. It just shouldn’t be this hard. ■

Ms. Boles lives in Hunstville, Alabama.