Dr. Mark Lewis, 41, is director of gastrointestinal oncology at Intermountain Healthcare in Murray, Utah. He’s also a pancreatic cancer survivor, recently celebrating the fourth anniversary of his Whipple procedure, a complicated surgery to remove the head of the pancreas, part of the small intestine and the bile duct, the gallbladder and nearby lymph nodes to stop tumors from spreading. Lewis recently shared his story with TODAY.
I’ve known I've had a problem since I was 30 years old when I diagnosed myself with tumors in my pancreas.
I had just finished my medical residency and had been working 80 hours or more a week. I was tired, I wasn't eating well and I had chronic abdominal pain that I thought was just related to that. At one point, it felt like appendicitis — a pain in my right lower abdomen. But when I got it checked out, it wasn't appendicitis. It was this more diffuse problem that went back to my pancreas.
My story is a little different than some because I was able to see that it was hereditary in my family. Not more than 10% of pancreas cancer is thought to be hereditary and I was in that, I suppose, lucky minority. I had forewarning about my pancreas — a lot of other patients don't.
The whole reason I went into oncology in the first place is my dad died of cancer when I was 14 and he was 49 years old. I realized from his case there must be a risk factor for young-onset cancer that ran in our family. I was able to trace it to his dad — my paternal grandfather — and my paternal uncle.
My father’s cancer was in a gland in the chest called the thymus. It was a really weird tumor. When I started developing symptoms at a relatively young age, I realized I must carry a genetic defect, got tested and I found my own mutation — multiple endocrine neoplasia type 1 (MEN1).
It's a mutation that causes a bunch of different cancers, including cancers in the lung and in other glands.
My symptoms also included high levels of calcium in my blood because my parathyroid glands — which control the rate at which calcium leaves your skeleton and enters your bloodstream — were overactive. So at 30, I already had osteoporosis because I had calcium leaching out of my bones for years and didn't know it.
The mutation means that for my entire life, I am prone to tumors developing in my pancreas. I am very closely followed and have annual scans. They showed tumors that grew slowly and only required monitoring for a while.
There are two different types of cells in the pancreas: those that make hormones like insulin and those that make digestive enzymes. Steve Jobs and Aretha Franklin are the two famous people who had “my type” of cancer — pancreatic neuroendocrine tumors.
When I was 37, a tumor in the head of my pancreas doubled in size over the course of a year. That rate of growth is ominous — it tells you something is changing biologically. That tumor was just on the cusp of metastasizing to my liver.
I had two options: have surgery to leave part of my pancreas behind — even knowing that I have tumors there because my entire pancreas has tumors in it — or have my whole pancreas removed, which would have left me with brittle diabetes.
I chose the Whipple procedure, which is a partial pancreatic removal. Only 15% of my patients with pancreatic cancer become eligible for surgery because all too often, we diagnose it when it's already spread or when the tumor has already wrapped itself around key blood vessels. That's one of the big challenges with this disease.
The Whipple procedure is a complicated surgery that took more than six hours. The pancreas is located in a very tricky spot at the back of the abdomen. It's extremely high value real estate, if you will, because there are a lot of organs in that area. You don't mess with the pancreas unless you absolutely have to.
Most people are in the hospital for a week and then it took one to two months for me to approach some sense of normalcy. The biggest problem is learning to eat again. This operation so profoundly rearranges the upper part of the gut that the patient needs time to adjust to a new way of eating. At first, you can only eat extremely small volumes and I was supported with intravenous nutrition for over a month. There's a tremendous amount of weight loss associated with this. I lost 25 pounds and I was never very heavy to start with.
By undergoing this surgery four years ago, I was able to avoid chemotherapy and so far, I've been able to avoid metastases. I still don't have the cancer in my liver, but that could change. I’m monitored annually.
I've been able to stay as healthy as I can and continue to practice, which is really my calling. I love oncology, I was drawn to it by losing my dad and taking care of myself means I can take care of my patients.
The larger message is that family medical history really matters. It's so important for people to know what happened to their other relatives — not just that there's a cancer in the family, but finding out as much specific detail as possible. Knowing a relative had this type of tumor at this age allows you to identify mutations and then predict your own risk.
This interview was condensed and edited for clarity.