When then 29-year-old Jessica Acosta visited with a physician after experiencing intestinal and bowel distress for several weeks, she was told, "This sounds like IBS." Her initial response, she recalls, was relief: "I remember saying out loud, 'Well, at least she doesn't think it's cancer.’" But when the pain intensified and she noticed blood in her stool, Acosta made an appointment with a gastroenterologist who, at least initially, confirmed the IBS diagnosis.
This time, however, Acosta didn't accept the doctor's opinion. She insisted on a colonoscopy, which revealed a six-centimeter mass in her rectum. "The doctor said, 'Fortunately, we did this early,'" she recalls, referring to undergoing the procedure before the recommended age of 30 for patients with Lynch syndrome, a condition that increases the risk of certain cancers. “That’s the moment when I was like: Self-advocacy works. Because if I hadn’t pushed for that colonoscopy and said I needed to get an answer, it would have been a totally different story.”
Acosta received treatment and recovered, and now works with Fight Colorectal Cancer to encourage young adults to advocate for themselves more aggressively in the medical realm. Her cancer experience, unfortunately, remains far too common.
Young adults with cancer still fall into a diagnosis, treatment and support void between pediatric and older-adult cancer care. They must overcome delays and skepticism, all while navigating a care ecosystem not designed with their needs in mind. They are the invisible generation of cancer patients.
“Pediatric patients have their parents taking care of financial and legal decisions. Older adults have Medicare and established relationships with primary care physicians and at least some experience with the healthcare system,” explains IPG Health chief medical officer Sommer Bazuro, PhD. “And then you have this in-between group that may fall through the cracks.”
Imre Varju, MD, PhD, MA, CHES, group director, patient support strategy at YuzuYello, an IPG Health company, agrees, adding, “Nothing about the care journey serves these populations well.”
‘I didn’t expect it to happen to me’
Many of the challenges stem from what Laura Catalusci, MA, MCHES, executive director, account management at YuzuZest, an IPG Health company, calls “the I-didn’t-expect-it-to-happen-to-me factor.” Adults between the ages of 18 and 50 are consumed by careers and relationships and family. Upon receiving a cancer diagnosis, it all comes crashing to a halt.
“What they think is, ‘This is not the plan I had when I woke up this morning,’” Catalusci adds.
The cancer-care system reinforces that sense of unreality. To begin with, many young patients are told they are too young for cancer. This creates a disconnect with the symptoms they are experiencing, which can spiral into feelings of self-doubt and isolation.
“If I’m a patient and I hear skepticism from a physician, I’m going to start questioning myself,” notes Annie Foster, group director, social media creative at IPG Health.
Worse, symptoms like fatigue and weight loss are often explained away or otherwise discounted, even when they are consistent with cancer. “In most stories we have heard from patients, they had to ask several times before reluctantly being offered testing,” says Corrine Ellsworth-Beaumont, PhD, MFA and CEO of Know Your Lemons Foundation, a breast health charity. “This often led to delays in their diagnosis – by not being marked as urgent, or taking several visits before they were referred.”
Barriers to effective cancer care vary by age, gender, geography, culture and so much more. People with cancer between the ages of 18 and 30 may be less established personally and professionally, and often don’t have a regular primary care physician. Those in their 30s may be juggling careers, childcare and a mortgage; those in their 40s might simultaneously be caring for children and aging parents. Individuals in the first two groups might also be concerned about the potential effects of cancer treatment on their fertility.
In other words, young adults tend to have a lot going on. As a result, they might prioritize other aspects of their lives over their health. “You get people who believe they can diet and exercise their way out of any health situation,” Bazuro says.
Then there’s the financial toxicity that often comes with cancer in early adulthood, and a health-insurance infrastructure seemingly custom-built to compound the disorientation experienced by individuals who have just learned they are sick. This, Ricki Fairley, CEO of TOUCH, The Black Breast Cancer Alliance, explains, strikes young adults at precisely the time they’re least well-equipped to manage it.
“What does a 20- or 30-year-old know about any of this? I had breast cancer in my 50s, when I had a career and a house and a life. How are young people expected to cope with it all?”
Meanwhile, individuals on insurance plans with lower monthly premiums (and thus higher deductibles) sometimes find themselves delaying treatment in order to preserve their financial solvency.
“People on the younger age of the spectrum are more likely to be uninsured or underinsured, and they probably haven’t had to deal with out-of-pocket costs or prior approvals before this,” says Sanja Zivkovic, strategic planning director at Mosaic Group, an IPG Health company. “If you know you’re going to be paying more every time you see a doctor or get a test, you might wait until your symptoms are more severe before getting help.”
The path ahead
Foster believes the road to transcending these barriers starts with education. “We need to give young people information about their own bodies so they can recognize changes or recognize symptoms when they’re most treatable,” she explains. And that information needs to be conveyed in the social channels where many young adults go in search of community.
“They can more easily find their people on social media. What you find is they share both empathy and information – ‘Hey, here’s something that worked for me; maybe it’ll work for you,’” Foster adds.
All information, however, needs to be carefully calibrated to account for age, gender and cultural differences. It also needs to be administered judiciously. “There’s data from the web, social media and wearables, and sometimes it’s hard to tell what’s credible or actionable,” Zivkovic explains. “The goal is for patients to be informed but not overwhelmed. More data doesn’t always lead to better decision-making.”
Then there’s the scourge of health misinformation that proliferates online. “The internet is a great place for patients to find support, but there’s also this huge mass of downright incorrect information that people have access to,” notes Zac Getty, senior manager of education at Fight Colorectal Cancer. “You see all kinds of alternative treatments and pseudoscientific woo-woo, which erodes trust in providers… It’s hard to find verifiable information.”
Bazuro, for her part, thinks the cancer-care experience needs to be filtered through a patient-experience lens. She’d like to see healthcare providers, administrators and technologists collaborate to remove as much of the friction from the process as possible, whether by initiating one-click scheduling for physician visits and treatments or by easing access to imaging and diagnostics.
“That’s the expectation of all the young adult age groups, because that’s how everything else in their lives works. The more time people have to sit and ponder, the less likely it is they’re going to act.”
Such action, Catalusci says, can be spurred by ambassadors – former patients familiar with the twists and turns of treatment and recovery, who often pick up where oncologists and other care providers leave off. “Too often we rely on physicians for everything. Ambassadors have lived experience to share, because they’ve been through it themselves,” she explains.
Fairley, on the other hand, touts the caregiving and support bona fides of her organization’s nurse navigators, who are on call 24/7/365 and available to advise breast cancer patients on everything from sexual activity during treatment to locating nearby houses of worship or yoga studios. Their most important role, she adds, “is to give a hug. You can get medicine from the doctors, but sometimes what you need is that hug.”
Pharma can and should play a role as well. Varju would like to see more young adults with cancer steered toward the formal support programs offered by pharmaceutical companies.
“There’s so little awareness of these programs,” he says. “If you get patients into support programs the moment they start on a medication, they are much more likely to stay adherent.”
Finally, nearly every observer believes that the cancer-care experience must increasingly prioritize survivorship support. Individuals in their 20s, 30s or 40s have a very different road ahead of them than those treated for cancer later in life. Young survivors inevitably emerge from their care as very different people than they were prior to diagnosis, yet they’re often expected to resume life as if the interruption was a mere blip on the radar.
“All you’ve known for the past few years is treatment. Where do you go from there? There’s no road map,” Getty says.
That’s probably why, more than a year after Acosta’s care team gave her a long-awaited and hard-earned NED designation – no evidence of disease – she has chosen to focus her advocacy efforts on survivorship.
“I felt like I was walking up a hill and, once I got to the top of it, instead of flat land I just dropped right down,” Acosta recalls. “For so many people, it’s like, ‘Okay, you’re good, see you in three months,’ when what they may need is help looking for a job or getting out of debt. That’s the next big obstacle for us to address.”
The editorial staff had no role in this post's creation.