What it’s like to live with cancer and neuroendocrine tumors (NETs)

Chris Meyer does her best to practice good mental hygiene.

The sociology professor, 66, stays active and engaged after undergoing treatment for neuroendocrine tumors (NETs) in her small intestine and liver. She continues to teach, exercise at the gym and go canoeing with her sister.

Nevertheless, dealing with a chronic disease is not easy.

"It's this balance of feeling good – like 'I don't have cancer' – but in the back of my mind, I wonder when this is going to become a problem," says Meyer, of Porter, Indiana.

When Meyer first felt unwell in 2019, she remembers wondering: is this what getting older feels like? She struggled to walk up the stairs to her condo. She began losing weight and sleeping poorly – something she waved off to the exhaustion of caring for her ailing father.

Then her doctor ordered a blood test and found clues to a very serious problem: Meyer was anemic, with elevated liver enzymes. Since she'd already had stomach polyps, a physician performed an endoscopy which uncovered a two-centimeter NET in her distal stomach. A PET scan revealed that her liver was riddled with cancer.

"Looking back, I'd either ignored or written off a lot of things, like my stomach being distended because my liver was so big," Meyer said. "I could only take a few bites of food. I just really felt miserable."

Her medical team explained that NETs grow slowly: her body had likely been fighting them for years. In November 2020, she started on monthly injections of lanreotide, a drug that blocks the growth hormone that feeds these slow-developing tumors. Surgery was ruled out since tumors had spread to more than half of her liver.

While researching NETs online, Meyer discovered the Xavier Keutgen, MD, an NET expert who specializes in the extensive removal ("debulking") of liver tumor metastases.

At their initial meeting, she remembers telling Keutgen that she'd been told lanreotide was the only treatment option for her cancer.

"Dr. Keutgen said, 'Well, that's not true. There are a lot of things we can do,'" she said.

Along with oncologist Chih-Yi "Andy" Liao, MD, and interventional radiologist Osman Ahmed, MD, Keutgen developed an intensive treatment plan.

"What concerned us was that Chris had a high liver tumor burden, meaning that just observing the tumors until they grow further could have put her at risk of fulminant liver failure in the future," said Keutgen.

"Because she's relatively young and has a very good performance status, we decided to offer her a more aggressive, multidisciplinary treatment approach with the goal of taking out as much tumor as possible and preventing that risk of liver failure."

Liao started Meyer on an oral chemotherapy regimen involving capecitabine and temozolomide, two drugs that can shrink NETs. Ahmed then performed two liver embolizations, injecting microscopic beads into targeted arteries to starve tumors of nourishing blood.

It took Meyer three days to recover from each procedure. The nausea was the worst part, she recalled.

Those two treatments dramatically reduced the amount of tumor in Meyer's liver. The college professor soon felt well enough to resume working out and traveling.

The treatments also made surgery feasible. Yet the UChicago Medicine team delayed operating so that Meyer could complete her spring teaching semester. She and the team scheduled several appointments around events that were meaningful to her, such as canoe trips.

"I didn't want this to dominate my life," said Meyer. "The doctors were very good about accommodating my schedule and saying it's important you live your life and that most of these things can be moved around a little bit."

In June 2022, Keutgen removed the primary tumor in Meyer's stomach and almost all of the remaining tumors in her liver.

It's not unusual for patients like Meyer to have tiny deposits of NETs left post-surgery, because the diseased cells are microscopic, Keutgen said. Nevertheless, surgery is vital when it comes to resetting a patient's health "clock" by minimizing sources of potential future complications.

"Now her liver can start growing healthy tissue and replace a lot of the tumor that has shrunk or been removed surgically, " said Keutgen. "It may be many, many, many years until those remaining small tumors grow again. And if they do, we can still offer a lot of therapies, including peptide receptor radionuclide therapy (PRRT), or even operate again."

Today, Meyer takes monthly injections of lanreotide to reduce tumor growth. She also undergoes twice-yearly imaging to monitor her liver and to evaluate tumor size, making sure changes aren't as dramatic as the initial discovery three years ago. And she still struggles to decide what to share, and with whom.

"When you tell people you have cancer, you have to do a lot of reassuring," said Meyer. "People want to be helpful and I understand that, but it puts a lot of work on the patient to explain things and to go through all this."

She's undertaking an intense gym plan to improve her stamina, and recently returned from a week of canoeing in the Boundary Waters in Minnesota.

"I've come so far from where I was three years ago. Sometimes, it's kind of good to remind myself how much better I am now," said Meyer. "And there's no reason to think that's going to change anytime soon."