By Sara Bondell - May 08, 2023
Raphael Misael fidgets in his wheelchair. He’s cradling crutches in his lap while being wheeled in to see his social worker. He’s about to face a hospital stay at Moffitt Cancer Center for yet another intense round of chemotherapy. After that, doctors are recommending Misael have his leg amputated above the knee to remove the cancer that has riddled his bones.
It’s a life-transforming decision for anyone, especially a 28-year-old.
Misael likes to rock climb and hike. He’s a freelance videographer whose passion is music videos. One of his videos has 13 million views on YouTube. He has tattoos that creep out from under his sweatshirt and wrap around his knuckles. Over 20 actually.
He takes off his hat to show his social worker, Olivia Luginski, the newest one on his scalp: two skulls with the words “Die Later” sweeping over them.
It has been a tough year for Misael, who was diagnosed with osteosarcoma just eight months after his mother was diagnosed with colorectal cancer on her 30th wedding anniversary.
A much-needed smile starts to creep across Misael’s face as he talks with Luginski. His dad brags about his handsome son, and Misael shares his dreams of returning to California to continue his career. Luginski helps Misael with questions about health care coverage and offers to connect him with other young patients who have faced amputation.
A licensed social worker in the Sarcoma Department, Luginski estimates that 1 in 5 of her patients are young adults — a large number compared with other outpatient clinics. She has become a subject expert in adolescent and young adult (AYA) patients, who are between ages 15 and 39, and she is committed to ensuring all AYA patients and survivors have access to resources, services and events specific to their age.
Her expertise is needed now more than ever, as the rate of young adults diagnosed with multiple types of cancer is rising. According to a 2022 review of global cancer diagnoses, cases of breast, colon, esophagus, gallbladder, kidney, liver, pancreas, prostate, stomach and thyroid cancers have been increasing in 30-, 40- and 50-year-olds since 1990.
It’s a trend providers are also seeing at Moffitt. More and more, Luginski’s colleagues in other clinics are coming to her with questions and requests for resources for younger patients.
Luginski is eager to help. “This is such a vital, fragile time to get a chronic or terminal illness diagnosis.”
A CHANGING PATIENT POPULATION
Colorectal surgeon Julian Sanchez, M.D., stops for a moment while making the rounds to check in on patients he has recently operated on. Something is different.
It hits him. Every patient is 35 or younger.
"That’s not happening every week, but the fact that it happened one week when it’s never happened in my career, that means something is changing."- Dr. Julian Sanchez, Gastrointestinal Oncology Program
“That’s not happening every week, but the fact that it happened one week when it’s never happened in my career, that means something is changing,” Sanchez said.
Recent analyses of colorectal cancer rates confirm that more younger individuals are being diagnosed with the disease. A 2017 American Cancer Society study found that those born in 1990 — who will be turning 33 this year — have double the risk of colon cancer and quadruple the risk of rectal cancer compared with those born around 1950.
A 2023 American Cancer Society report found 1 in 5 colorectal cases in the United States occur in people younger than 55. This is about twice the rate in 1995, when a little more than 1 in 10 cases were in this age group. According to Moffitt’s Cancer Registry, which collects data from patients diagnosed and/or treated at Moffitt since 1986, the number of colorectal cancer patients seen at the cancer center between the ages of 15 and 50 has doubled from 2000 to 2020.
“When it’s a 30-year-old with two kids who are my kids’ age, it just hits,” Sanchez said.
Sanchez felt that gut punch when he met Karina Nicajevsky. She was a 29-year-old mother of two when she was diagnosed with stage 3 colorectal cancer in 2020. Her husband was deployed in Korea when she began treatment.
“I was always the youngest one in the chemotherapy area and doing radiation,” Nicajevsky said. “I always got a lot of looks like, ‘What are you doing here?’”
Nicajevsky moved in with her mother, who became her support system while her husband was away and helped take care of her daughters, who were 5 and 7 at the time. Surgery in 2021 left Nicajevsky with a permanent ileostomy, where the bowel is routed through an opening created in the abdominal wall so feces can leave the body and be collected in a bag
She just hit her one-year mark cancer free, but Nicajevsky feels the lasting impacts of a cancer diagnosis at a young age. While a history of an inflammatory bowel disease increased her risk of cancer, the recent trends are still staggering for her. “It’s so sad to hear more and more people my age are being diagnosed. I would love to find out why it’s happening.”
In response to the rising colorectal cancer rates in young adults, in 2021 the U.S. Preventive Services Task Force began recommending screening colonoscopies start at 45 instead of 50 for those of average risk. Projections show that by 2040, colorectal cancer will surpass breast cancer as the leading cause of cancer-related deaths for Americans 20 to 49 years old.
“No way did I think I would be treating this patient population,” Sanchez said. “But in my lifespan of a colorectal surgeon, I have seen more and more younger-onset patients coming in.”
NO CLEAR ANSWER
No one knows for sure why cancer rates are rising in younger people. According to the National Cancer Institute, overall cancer incidence may increase by an additional 11% to 12% by 2030 in people 25 to 39 years old.
Early onset cancer has become a research priority across cancer centers, including at Moffitt. Researchers are investigating several major risk factors that could be to blame, such as obesity, diet, changes in the gut microbiome and early antibiotic exposure.
Doratha A. Byrd, Ph.D., is part of the early onset colorectal cancer working group. She is using grant funds to study whether the microbiome differs in early onset colorectal cancer cases compared to later onset cancer.
The gut microbiome is made up of trillions of microorganisms that live in the gastrointestinal tract. It processes nutrients and plays a major role regulating overall health. There is emerging evidence about how the gut microbiome works, including that it is modifiable by environmental factors and potentially plays a role in cancer.
“There are a lot of individuals really interested in studying early onset cancer. It’s really concerning because historically, at least for certain cancers, they have been a disease of aging,” Byrd said. “We really want to understand what’s happening and why are people getting this younger.”
Previous studies have linked obesity, sedentary lifestyles and Western dietary patterns to early onset colorectal cancer. A family history of the disease has also been associated with increased risk. Evidence supporting the role of other risk factors, such as smoking and antibiotic usage, is limited and the focus of ongoing research.
“There may be differences across birth cohorts, such as in antibiotic use and intake of ultra-processed foods,” Byrd said. “I think these could be two really interesting exposures to be investigated in terms of how they relate to getting colorectal cancer younger.”
SUPPORTING YOUNG PATIENTS
When Amber Skinner became the AYA Program coordinator at Moffitt almost six years ago, about 70,000 adolescents and young adults were diagnosed every year nationwide. That number has now climbed to 89,000.
The number of new AYA patients treated at Moffitt continues to rise each year, most recently increasing by 18.2% in the past three years. The largest increase is seen in the 35-39 age range.
“Every year these numbers are going up a bit. It’s not dramatic, but we can see it,” Skinner said. “The next three years, we are going to have more patients, and we need to prepare for that because they’re not just getting cancer younger, they are at risk for a secondary cancer later in life.”
Moffitt’s AYA Program provides patients ages 15 to 39 with specialized medical and psychosocial care that addresses the unique needs of the patient population. The program not only offers peer-to-peer support but resources on topics like fertility, financial toxicity and mental health.
Skinner didn’t even know the AYA space existed until she began her work at Moffitt. Her stepmother died five months after being diagnosed with an aggressive gynecological cancer at 43, leaving behind young children and the lasting impacts of losing a young mother. She knows what it’s like to be a caregiver, stepdaughter of a young mother with cancer, and what challenges young cancer patients and their families may face. This fuels her fire to help grow the AYA Program at Moffitt and nationally.
“It’s essential that these patients have the support not only in treatment, but after. How do they navigate life after cancer? How do they navigate a recurrence? This is a stage of life where a lot of changes are happening. They’re getting married, going to school or trying to start a career,” Skinner said.
The program has grown alongside the increase in patients it serves, especially when it comes to research. The AYA population has been historically underrepresented in research studies and clinical trials. So the program created an AYA research cohort to build a repository of demographic information for patients within the age range that is readily available for use in upcoming research. A team of researchers meets annually to identify ways to improve the cancer care experience for the AYA population. More recently, the team has also been using the cohort to enroll patients in research studies to create interventions and better study early onset cancers. There were only a few AYA research studies at Moffitt five years ago. As of January 2023, there are 15.
The program created an AYA specialty nurse role in 2021. There are now 25 AYA nurses working in outpatient clinics and the inpatient hospital floors. These nurses are specifically trained to care for young adult patients and work to identify patients who may need additional resources. The goal is to make sure every young patient walking through the doors is supported, learns about fertility preservation prior to treatment and knows the AYA Program exists.
Every social work intern and every new hire within the Social Work Department meets with Luginski during orientation so they can get a better grasp on the unique needs these patients face and how the AYA Program can offer support.
LIGHT AT THE END OF THE TUNNEL
Like sarcoma patient Raphael Misael, most young adult patients can’t even begin to comprehend the challenges they will face just because of their age when they are diagnosed. It’s hard to focus on physically healing when you’re moving back in with your parents, deferring student loans and deciding if you ever want to be a parent while you’re still single.
“It’s been a challenge to come back home,” Misael tells Luginski during his social work visit. “I have been independent for so long.”
“That’s not off the table forever,” she replies. “In order to reach a larger goal, it is necessary to create smaller goals in between. We need that light at the end of the tunnel.”
Like all her patients, Luginski will continue to help steer Misael toward that light. It’s a task she doesn’t take lightly, one that is both extremely rewarding and heartbreakingly tragic. She faces the same reality that doctors and nurses do: Not every patient can be saved, and when a young patient’s life is cut short, it can hurt more.
The dichotomy of the joy and pain that comes with cancer care is what keeps everyone moving forward. Researchers and providers are more dedicated than ever to investigate why cancer rates are increasing in young adults and how to better support and treat them.
It’s a dedication Luginski renews every Oct. 1 as she pauses to remember a patient she lost who shared the same birthday, down to the year.
“It just puts it into perspective of how fragile life is and how beautiful it can be and that these support services, these advocacy efforts make a difference.”
This article originally appeared in Moffitt's Momentum magazine.