Cindy Smith, diagnosed at 58

Neuroendocrine carcinoid of the liver is a sneaky cancer. I belong to a neuroendocrine cancer group and everyone in the group had been misdiagnosed before finally getting answers. When this cancer is found, it’s advanced. This is my story of finding it.

I was exhausted. More than just the tired you feel after a long day, this exhaustion was persistent. Then other strange symptoms appeared—every time I ate something, I flushed bright red and had an upset stomach or diarrhea.

I was busy, but these symptoms were affecting my daily life so I went to the doctor. My doctor thought it was food allergies so he sent me to an allergist. The doctor couldn’t determine which food or ingredient was making me sick, and told me to keep a food diary and to eat “clean” to control the symptoms.

“Listen to your body, and don’t give up until you have an answer.”

I just kept feeling worse. My legs started to swell, and it got so bad that I had trouble getting into the car. I was admitted to the hospital, and told it was cellulitis. It didn’t clear up.

They sent in a heart doctor to do some tests because of the swelling. One test revealed a leaky tricuspid valve. Another test revealed another problem—spots on my liver. That’s when they discovered the cancer. It was the cancer that had damaged my heart. My cancer was advanced, rare, and incurable.

I was misdiagnosed for about five years. The whole time, I knew something was wrong but kept getting different answers about the cause. If I had been diagnosed earlier, my heart would be okay. Listen to your body, and don’t give up until you have an answer.

Symptoms

  • exhaustion
  • flushed complexion after eating along with upset stomach and diarrhea
  • swelling of legs