Team approach, attitude keep rare cancer in check

Neuroendocrine tumors bring unique challenges for patients, doctors
January 20th, 2016

It started with heartburn right around his 50th birthday, which he tamed with Tums and Zantac. Although his wife told him he should see a doctor, Doug Everett shrugged it off: Everyone has heartburn, right?

It was eight years until Everett brought it up with his doctor – David Gaspar, MD, of University of Colorado Hospital’s AF Williams Family Medicine Clinic at Stapleton. It wasn’t the heartburn so much as a sense of just not feeling right, which Gaspar suspected might be a reaction to the Lipitor Everett was taking for a slight increase in cholesterol. Gaspar palpated Everett’s liver and ordered an ultrasound, which Everett underwent on May 2, 2014.

Within days, a team of UCH cancer specialists had diagnosed a primary pancreatic neuroendocrine tumor and assessed the treatment options in a multidisciplinary clinic. Less than a month later, on May 30, 2014, Richard Schulick, MD, MBA, surgical oncologist and chairman of the University of Colorado School of Medicine’s Department of Surgery, removed a cancerous mass larger than a softball and fed by no fewer than five arteries. Schulick then reconfigured Everett’s digestive tract in a Whipple procedure. In the ICU afterwards, Schulick told Everett, “I don’t know how you ate.”

Doug Everett in his office at National Jewish Health.

Everett’s story shows that a combination of ongoing care from a diverse team of specialists and a positive attitude can help someone stay healthy – despite having the same cancer that killed Steve Jobs.

A rare cancer

Neuroendocrine cancers are rare, accounting for just 1 to 2 percent of pancreatic cancers. They’re also slow-growing and tend to spin off metastatic tumors that end up larger than the parent tumor, says Tom Purcell, MD, MBA, executive director of Cancer Services for University of Colorado Hospital and the CU School of Medicine medical oncologist treating Everett.

The cancers can manifest in many places – the pancreas, the small bowel, the lungs and elsewhere. The “endocrine” refers to hormone-secreting organs such as the hypothalamus, the pituitary, the thyroid, the adrenals, and the pancreas (which secretes hormones into the bloodstream as well as digestive fluids into the gut). The “neuro” alludes to these hormones’ effect on the activity of nerves and vice-versa. The combination regulates everything from metabolism to mood.

When Schulick first described the tumor to Everett and his wife, Char Sorensen, the surgeon called it a “well-behaved pancreatic cancer.”

Neither Everett nor Sorensen had ever heard of neuroendocrine cancer. Everett in particular is no health care neophyte. He is head of the Division of Biostatistics and Bioinformatics at National Jewish Health in Denver and has a PhD in cardiorespiratory physiology. The pancreatic cancers they knew were as nasty as they come: The typical pancreatic adenocarcinoma is the most fatal of cancers, with just 6 percent of patients surviving five years after diagnosis, according to American Cancer Society data.

Either way, the diagnosis was jarring, Sorensen said. A close friend’s husband had recently succumbed to pancreatic cancer just 17 days after diagnosis.

“What I’d heard as far as pancreatic tumors is that people get them and they die,” she says.

It takes a team

Everett sits at a table in his National Jewish corner office. Snow falls outside the windows. He is trim and looks a solid decade younger than his 59 years. Shelves of technical and medical-science volumes augment a slightly bookish appearance. But this is an athlete – a former competitive swimmer who later ran and now cycles – 45 minutes well before dawn on the trainer this morning, he says. Nothing about him suggests that he’s a cancer patient.

Doug Everett and Char Sorensen
Doug Everett and Char Sorensen walking near their home in Westminster last summer.

And indeed, the surgery initially changed his life dramatically. The tumor had been blocking pancreatic secretions into his gut and had affected gastric emptying, too. The Tums had followed the tumor out the door, as did the Lipitor. The mild hypertension he had experienced prior to surgery also disappeared – Everett figures the tumor itself was secreting a hormone that triggered it.

But that’s not the end of the story. Neuroendocrine tumors may grow slowly, but they do grow, and they spread to other organs. So patients like Everett undergo scans and blood tests every couple of months for the rest of their lives. In Everett’s case, the imaging two months after surgery was clean, as was another round two months after that. But in November 2014, a scan showed tumors in his liver’s right lobe.

Purcell took Everett’s case to a session of the University of Colorado Cancer Center’s neuroendocrine multidisciplinary clinic (MDC) at UCH. The group, which includes specialists in medical oncology, surgical oncology, radiation oncology, gastroenterology, interventional radiology, pathology, radiology and nuclear medicine, meets weekly to discuss complex cases like Everett’s.

“No one physician can take care of neuroendocrine cancer patients,” Purcell says. “It requires a diverse team of specialists that approach the patient together, each bringing treatment tools to the table.”

Rad onc

The goal is not only to extend a patient’s survival but also to improve quality of life. “With the right tool at the right time, you can stretch out the need for interventions and keep the patient as well as possible – even those we don’t cure – for 5, 10, 15 years,” Schulick says.

For Everett and Sorensen, access to the MDC saved time and stress, but was also reassuring, Sorensen says.

“I know we’re going to get the opinion of the whole group and not just one person,” she says. “It’s such a relief that we have had this whole team behind us.”

The MDC’s consensus was to start Everett on oral chemotherapy in December 2014. The tumors shrank, but so did Everett’s blood-cell count. The MDC team changed the care plan to radiation therapy, which Tracey Schefter, MD, a CU School of Medicine radiation oncologist, performed in March 2015. There’s still a tumor visible in the liver, but it hasn’t changed in appearance since, Everett says. Schulick tells him that  removing part of the liver is a possibility, but they’ll continue to watch and wait.

Attitude matters

This sort of uncertainty, inherent in neuroendocrine tumor treatment, can take a psychological toll, Purcell says.

“The good thing about neuroendocrine tumors is that patients live a long time with metastatic disease,” he says. “The flip side is that we have to continue surveillance, and that can be very stressful for the patient.”

This is where Everett’s attitude has been important. He is, as Sorensen puts it, “one of these relentlessly optimistic people. I really believe that goes a long way toward why he’s doing so well – because he believes he’ll be fine.”

The competitor in Everett also plays a role. He’s been through so many surgeries – shoulders, an ankle, a 2012 prostatectomy – that he considers them to be inconveniences as opposed to life-altering events. He prefers the word “discomfort” to “pain” because “pain is scary, and discomfort is something you manage.” He views his cancer as a tough adversary, but one against whom he can hold his own.

Tom Purcell
Tom Purcell during a weekly neuroendocrine multidisciplinary clinic at UCH.

“I’m not afraid, and I have every expectation that I’ll succeed,” Everett says. “If you go into a competition thinking you might not win, you’ve already lost.”

He’s not the only player in this game, he adds.

“Without my contribution, what Schulick, Purcell and Schefter do goes for naught,” he says.

For those who find themselves facing a cancer diagnosis like his, he says to “keep asking questions until you get answers.” Keep living life and make sure you feel good about the health care professionals you’re seeing – not only about their abilities as practitioners, but also their personal demeanor, because cancer treatment is a collaboration, he says.

That applies to how doctors interact with family, too. Sorensen says she’s asked both Purcell and Schulick “the same inane questions probably 15 times, and they both look at me and say, ‘You know, that’s a really good question.’”

“She knows that they listen to her and respect her,” Everett says. “I think that’s fabulous.”

Doug Everett, Char Sorensen and UCH medical oncologist Tom Purcell, MD, talk about Everett’s case and the unique challenges of neuroendocrine cancer.

About the author

Since 2008, Todd Neff has written hundreds of stories for University of Colorado Hospital and UCHealth. He covered science and the environment for the Daily Camera in Boulder, Colorado, and has taught narrative nonfiction at the University of Colorado. He was a 2007-2008 Ted Scripps Fellowship recipient in Environmental Journalism at CU.

His latest book, "The Laser That’s Changing the World," tells the story of the inventors and innovators who saw, and ultimately realized, the potential of lidar to help solve problems ranging from smokestack-pollution detection, ice-sheet mapping, disaster recovery, and, ultimately, autonomous-vehicle guidance, among many other uses. His first book, "From Jars to the Stars," recounts how Ball Aerospace evolved from an Indiana jar company - and a group of students in a University of Colorado basement - to an organization that managed to blast a sizable crater in the comet 9P/Tempel 1. "Jars" won the Colorado Book Award for History in 2012.

Todd graduated with a business degree from the University of Michigan, where he played soccer, and with a master’s degree from the Fletcher School of Law and Diplomacy at Tufts University. Before becoming a journalist at the turn of the millennium, he was an IT and strategy consultant. He once spoke fluent Japanese and still speaks fluent German.

When not writing, he spends time with teenage daughters and wife Carol, plays soccer, and allows himself to be bullied by a puggle he outweighs by a factor of seven.