Musician and Actor Wilko Johnson’s Pancreatic Cancer Journey

The guitarist and "Game of Thrones" actor was found to have a less aggressive type, known as pancreatic neuroendocrine tumor or PNET.

Wilko Johnson is a guitarist and songwriter formerly of the rhythm and blues band Dr. Feelgood, and one of the founding influences of the British punk movement.

Recently, he may be better known for his acting role on "Game of Thrones," where he played King Joffrey’s mute executioner, Ser Ilyn Payne.

In January 2013, Johnson received a diagnosis of terminal pancreatic cancer. He was given a few months to live and declined all treatments.

Instead, Johnson went on the road to perform with the Wilko Johnson Band. He wrote some new songs and released a new album, "Going Back Home," a new collaboration with the Who’s Roger Daltrey. He even went on a "Farewell Tour."

But he was still alive in April 2014, and he told BBC Radio 2 that doctors were baffled over his surprisingly good health:   

"The doctors have recently become curious as to why I’m not either dead or very, very ill."

Turns out, Johnson didn’t have the kind of pancreatic cancer most people think of when they hear the words "pancreatic cancer." After a reevaluation, it was determined that he has a less aggressive form of pancreatic cancer called a pancreatic neuroendocrine tumor, or PNET. This is the same kind of cancer that Steve Jobs was diagnosed with nine years prior to his death in 2011.

In an interview with Britain’s GQ, Johnson revealed to writer Tony Parsons that he "had an operation that removed his football-size tumor, as well as his entire pancreas, his spleen, part of his stomach, parts of both his small and large intestines, and involved the removal and reconstruction of blood vessels relating to the liver."

In the same interview, he told Parsons that having a diagnosis of terminal cancer gave him a sense of "euphoria":

"There was a shift of consciousness. I have never felt more alive. I have never known such ecstasies. I have never known such elation. I was living with idea that there was no future for me, that all I’ve got is the present time. Now. The future is yet to come and the past is irrevocable. I watched the snow fall in Kyoto and the sun was coming through the snow and turning it to gold and… I had this euphoria in the moment. And to live in the moment is something that’s very difficult to do. But I was forced to."

Johnson is now in good health and has written a book titled, "Don’t You Leave Me Here."

A Few Quick Words About the Pancreas

The pancreas is a fish-shaped organ which lies behind the stomach. It is made up of two types of cells:

  1. Exocrine cells: These cells produce a pancreatic juice that includes enzymes which aid in the digestion of food in the small intestine, breaking up proteins, carbohydrates, and fats.
  2. Endocrine cells: These are clustered in small groups (called the Islets of Langerhans) scattered throughout the pancreas. These cells produce important hormones such as insulin, glucagon, and somatostatin.

Islet Cell (Neuroendocrine) Cancer of the Pancreas

According to the National Cancer Institute, an islet cell tumor is a mass of abnormal cells that forms in the endocrine (hormone-producing) tissues of the pancreas. Islet cell tumors may be benign (non-cancerous) or malignant (cancerous). Islet cell cancer is rare–only about 5 percent of pancreatic cancers start here.

When islet cells in the pancreas become cancerous, they may make too many hormones. Islet cell cancers that make too many hormones are called functioning tumors. Other islet cell cancers may not make extra hormones and are called nonfunctioning tumors. Seventy-five percent of islet cell tumors are functioning tumors. Functional islet cell tumors are often named after the hormone they produce: gastrinoma, insulinoma, or glucagonoma.   

Surgery is the most common treatment of islet cell cancer. The doctor may take out the cancer and most or part of the pancreas. Sometimes the stomach is taken out (gastrectomy) because of ulcers. Lymph nodes in the area may also be removed and looked at under a microscope to see if they contain cancer.

If malignant cancer cells spread, they tend to go to the liver, and a portion of the liver may also be removed, if possible. Research has suggested that since the tumor is slow-growing, even when present in the liver, that liver transplantation is a reasonable option for islet cell cancer patients with spread to the liver.   

If the cancer is widespread, various forms of chemotherapy may be used to try and shrink the tumors.

The prognosis for islet cell tumors is generally better than for pancreatic cancer in general. They tend to be slower growing tumors, and because the hormones they produce cause symptoms, they are often caught at an earlier stage. According to the NCI, five-year survival rate is about 42 percent, compared with only 7.7 percent for pancreatic cancer overall.

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