Screen Shot 2016-06-13 at 1.57.32 PMIn the summer of 2014, Katy Davenport was leading a life many fit, Colorado thirtysome- things can relate to. She spent her days building her budding career (in real estate nance). By night, she gathered with friends for a drink or occasional game of karaoke. She was training for a marathon and planning a trip to Mexico. And she and her husband were busily remodeling a fixer-upper they’d just bought. “That remodel was, up until then, one of the most stressful things I’d ever been through,” recalls 34-year-old Davenport, as she sits in the University of Colorado Cancer Center lobby awaiting an appointment.

On Dec. 29 of that year, Davenport awoke from a colonoscopy to life-altering news no young, healthy woman would dream of: She had Stage 3 colon cancer and likely faced a long road of surgery and chemotherapy. She was blindsided. “I’d always thought of colon cancer as old man cancer – not something that could happen to me.”

In fact, while the incidence of colorectal cancer among older patients has declined in recent years due primarily to more and better screening, cases among young patients like Davenport – while still rare – are inexplicably rising. In Colorado, studies show rates rising 2.5 percent annually among those under 50. Nationwide, incidences are climbing by more than 5 percent per year among the 20 to 29 set. In all, about one in 10 colorectal cancer patients is 49 or younger.

Even more concerning: According to research published in the Journal of Clinical Oncology in 2014, younger patients tend to have more aggressive cancers that respond less favorably to existing treatments, putting them at greater risk of dying from the disease. “We are learning that this can be a very aggressive cancer in younger patients,” says the paper’s lead author Christopher Lieu, MD, director of the CU Cancer Center colorectal medical oncology program. “We need to do a better job treating it.”

To that end, Lieu has launched a research program aimed at identifying genetic differences between colorectal cancer in the young and old, in hopes of someday developing more person- alized treatments. Meanwhile, he says, one key to success for people like Katy is a team approach which takes into account the myriad unique challenges younger patients face.

“Cancer is hitting them at a different point of life when they may be in school or building their career or considering starting a family, and nobody their age can relate to what they are going through,” says Lieu, adding that younger patients also tend to have more severe treatment side-effects. “We take a multidisciplinary approach with every patient. But for these young patients, it’s all hands on deck.”

Screen Shot 2016-06-13 at 1.57.43 PMDiagnosis often comes late

Davenport first noticed something wasn’t quite right in July of 2014, when her stool became looser. She wrote it off, assuming the stress of the home remodel was getting to her. By September, she noticed some blood in her stool and went to a doctor, who gave her a prescription for hemorrhoid relief and sent her home. By November, Davenport grew frightened. But she was reluctant to talk to friends, or even family about it. “No one wants to hear you talk about your poop. I just kept hoping it would go away,” she says.

On Dec. 29, she closed her eyes and drifted off, assuming her colonoscopy would reveal whatever minor problem was to blame. When the anesthesia fog lifted, her doctor broke the news.

“She said ‘You have a 5 cm tumor in your lower colon. It doesn’t look good,’” recalls Davenport. “I was in total shock.”

Lieu says stories like this are not uncommon among younger colon cancer patients. When the disease is developing, they experience only minor symptoms and tend to downplay them. Then, when they nally make their way to a doctor, physicians often rule out colorectal cancer because they assume they’re too young. (The American Cancer Society recommends routine colorectal screening only after age 50 in people of average risk). One study, comparing colorectal cancer patients age 20 to 40 to those age 60 to 80, reported that younger patients often have their diagnosis delayed by more than six months. Fifty-six percent are diagnosed at Stage 3 or Stage 4.

“By the time they start to feel anything it is because the cancer has gotten really big,” says Lieu.

Screen Shot 2016-06-13 at 1.57.22 PMIt takes a village

Davenport was busy navigating insurance red tape and scheduling multiple pre-surgical appointments at another hospital when a friend suggested she get a second opinion.

“At first I was like, ‘Why? What are they going to tell me? That I don’t have cancer?’” she recalls.

She reluctantly obliged, ring off a text to CU Cancer Center radiation oncologist David Raben on a Sunday. He called her back within 30 minutes, and they spoke for an hour. On Monday she switched her care to CU. “I hadn’t even met this guy and he was treating me like a family member. I figured if everyone there is like that, that’s where I want to be.”

That week, Julie Banahan, a nurse navigator with the CU colorectal cancer clinic, took the reins for Davenport, collecting her medical records from her previous doctors, gathering pre- authorizations from her insurance provider, and scheduling her appointments. “I didn’t have to worry ‘Am I missing something?’ All I had to do was just show up,” says Davenport.

On Jan. 20, she underwent a five hour surgery in which Dr. Jon Vogel removed one third of her colon. Then came 12 rounds of chemotherapy, over the course of six months. But her care didn’t stop there. Prior to each chemotherapy session she received acupuncture and nutritional counseling to help prevent side effects. She met with a genetic counselor who scoured DNA from her blood and saliva in search of clues to what may have led to her cancer and might put other family members at risk. (Frustratingly for Davenport, they found no clear inherited mutation.) When a blood clot formed in her lung, she met with a gynecologist who took her off birth control pills (which can boost the risk of blood clots) and found another option for her. And when her side effects, including numbness, sensitivity to cold, and peeling skin, became unbearable, Lieu promptly switched her medications.

Meanwhile, Lieu, who doubles as clinician and researcher, added Davenport’s tumor to a growing repository of samples he and other researchers around the country are collecting to explore just what makes earlier-onset colorectal cancer different.

In 2015, he and his colleagues genetically mapped RNA from tumors of 9 patients under the age of 35 and 7 patients over the age of 70, using high-throughput computer sequencing. They discovered the younger tumors contained unusually high expression of 77 genes, including ERBB2, NOTCH3, and CAV1 – which are all known to spur the cell proliferation commonly associated with cancer. Lieu presented these preliminary findings at the 2016 Gastrointestinal Cancers Symposium in January. Now, he hopes to do further gene testing with a broader set of tumors, and use Davenport’s tumor, among others, to study what impact novel drugs may have on them in the lab. (FDA approved therapies already exist to target ERBB2.)

“That tissue could have just been thrown away, but instead it will be used to help us study this disease and look at potential treatment options. It is unbelievably helpful,” he says.

A new story

Today, Davenport is cancer free, running half marathons again, and planning a trip to New Zealand. With her owing blonde hair (which she thankfully never lost), clear blue eyes, and lean athletic frame, she appears the picture of health.

But she’s quick to point out that her journey is not over.

“I may be done with chemotherapy, but I’m not done with cancer,” she says, as she waits for an appointment with health psychologist Laura Melton. “I can’t go back to the life I had before, and sometimes I really grieve that. I never wanted to be defined by cancer, but it is part of my story now, and I’m trying to gure out what to take from it.”

Going forward, she will have more blood tests, scans, and appointments, and tiny aches and pains will worry her more than they once did. But there are, somehow, upsides to what she has been through.

“Cancer is scary. It brings to a young life stuff that we don’t expect to deal with until later in life: Death. Strength. Courage. But I’ve realized it also opens up life in a way that is more purpose driven,” she says.

Her advice to others going through it: “Love yourself and the people around you. Don’t waste time on things that don’t matter to you. Relax. Have fun. Be present. And don’t be afraid to ask for help.”