New strategies are needed to help adolescent and young adult cancer survivors get follow-up care.
When Lauren Evans received a diagnosis of chronic myeloid leukemia at age 26, she was informed that she would need to take medication for the rest of her life. What she wasn’t told, however, was that the cost of the medicine and follow-up appointments would lead to her filing for bankruptcy.
“With my form of leukemia, it’s treatment for the rest of my life,” Evans says. “There is no end date; there is no ringing of the bell. I’m constantly going in for chemo and for monthly follow-ups. ... I don’t even see an end to the medical debt.”
To cut the crippling costs of cancer treatment and follow-up care, Evans took risky measures such as using a lower dose of her targeted drug, a tyrosine kinase inhibitor. Sometimes she even skipped days to preserve her supply of the prescribed pills, which aim to stop the growth of new cancer cells. The consequences could have been deadly: Her cancer relapsed in 2017, and she landed in the hospital with a white blood cell count of above a million.
“It was back to square one, like I had never been in treatment ... but it’s not because (I want to be a nonadherent) patient,” Evans says. “It’s because I get scared to death. Anything can happen and I’ll be left without my meds — a loss of a job, insurance changes, financial stuff. The programs I’m on right now to pay for my meds can drop me at any moment.”
The American Cancer Society defines adolescent and young adult cancer patients (AYAs) as those who receive diagnoses between ages 15 and 19 (adolescents) or 20 and 39 (young adults) — that’s about 5,000 adolescents and 60,000 young adults a year in the U.S. Many findings have shown that AYAs have a poor record of adhering to their follow-up care. One study’s authors stated that nearly half of those who received diagnoses between 2005 and 2009 did not seek a follow-up visit with an oncologist in 2016, nor did a third of those who received diagnoses between 2010 and 2014.
Although these patients face an increased risk of side effects like cardiac conditions, infertility, lung dysfunction and secondary cancers caused by treatment, their age makes them less likely to make follow-up appointments and get scans, bloodwork and prescribed medication for a variety of reasons: high cost, a void of knowledge about survivorship health and a lack of disease-specific guidelines unique to AYAs. They are also at a stage of their lives when they are becoming independent, focusing on relationships, careers, education and other life transitions to which health concerns take a back seat.
“The majority of cancer patients in the U.S. are over the age of 65. If you think about long-term survivorship, even 10 to 20 years would be the cap,” Dr. Lynda Kwon Beaupin, who oversees the pediatric long-term survivorship program at Johns Hopkins All Children’s Hospital, says. “Keeping that perspective in mind, when you have an AYA, you’re looking way beyond that. You’re looking at people (who are) hope- fully 30, 40, 50 years or more out from treatment.”
The most common types of cancer among AYAs include lymphoma, leukemia, melanomas, sarcomas and testicular, thyroid, brain and breast cancers, though a few may get “older people’s” cancers. However, when it comes to prescribing a treatment plan, the majority of national guidelines are disease based, not age based, and do not account for an AYA’s particular life stage or number of years of life ahead.
A UNIQUE CHALLENGE
At 21, Samantha Watson learned she had Ewing sarcoma. Treatment disrupted her senior year of college for nine months, but afterward, she thought she was in the clear. Then, the day after she turned 23, she received a diagnosis of secondary myelodysplastic syndrome.
“It was uniquely hard at that time, because I was supposed to be doing different things,” says Watson, founder and CEO of the Samfund, a program of Expect Miracles Foundation that supports young adult cancer survivors as they recover from the financial impact of treatment. “All my friends were starting to graduate from college, starting their own jobs, starting to date and get apartments, and I had to stay close by the hospital for weekly checkups.”
When she attended support groups, Watson realized that her life stage left her feeling even more isolated. She was either the youngest or oldest by decades, she says. In addition, after speaking with survivors through her work at the Samfund, she found that although the reasons AYAs skip follow-up appointments or medications vary greatly, these factors are often unique to their age.
For example, at the time of their diagnosis, AYAs are the most likely of all age groups to be uninsured and face the greatest risk of unemployment. Many are in school or recently graduated, so they are navigating adulthood and independent decision-making for the first time. Some don’t have paid time off to go to follow-up appointments, and many can’t afford the associated costs. Some are trying to pay off student loans or recently aged out of their parents’ insurance; others are young parents themselves who skip appointments to care for their own children. The bottom line: Although most AYAs try their best to adhere to their follow-up appointments, many face difficult decisions, like trying to determine which side effects to prioritize and which to ignore — which can be a risky gamble.
A LACK OF GUIDANCE
The Institute of Medicine calls for a survivorship care plan to be offered to every patient who completes cancer treatment. However, not all centers provide the documents, which recap drug regimens, list doctors for follow-up care and discuss potential long-term side effects.
When Merissa Pemberton entered remission for Hodgkin lymphoma at 26, she was struck by how many decisions she would be forced to make once she was out of active treatment and by how little guidance she was given.
“When I was considered in remission, my doctor would tell me, ‘OK, I’ll see you in three months.’ She never said, ‘OK, we’re going to see each other every three months for this many years,’” Pemberton says. “I found that really tough, because I felt like we were working on this three-month wheel, and the rest was over a cliff’s edge. I had no idea what was going to happen.”
Pemberton’s oncologist advised her to follow up with other specialists, such as a urologist and a dermatologist, but without a firm grasp on which side effects are considered normal and which are red flags, she doesn’t always follow that recommendation.
“Anything that’s not related to my oncologist I’ve just completely thrown to the side,” Pemberton says.
“I have to make priorities. I have to decide what’s the most important, and I don’t have room in my budget to consider every specialist I may have to go to. ... It left me in the dark for a while, but it’s hard to doubt yourself when you don’t have any guidelines.”
Dr. Bijal Shah, a hematology oncologist and associate member of Moffitt Cancer Center in Tampa, Florida, calls this lack of direction for AYAs navigating life after cancer a “gigantic data gap that still hasn’t been filled.” Beaupin agrees.
“Most AYAs that I’ve seen are not familiar with that long-term survivorship concept. It’s not something that’s ever been discussed with them,” she says. “The concept of long-term survivorship came from pediatric cancer, and in the last few years, it has been adapted for adults. But nothing has been carved out for AYAs — people who may overlap those populations.”
Nonadherence to follow-up care poses risks that are far too great to take, say Shah and Beaupin. “We anticipate that 50% to 60% (of AYAs) will be cured if they can follow the therapy to the letter,” Shah says. “Anything that takes away from our ability to give a goal amount of therapy over a specific amount of time is going to compound that risk.”
Screening for long-term side effects — those that arise more than five years from the time of treatment — is another major reason to get suggested follow-up care, according to Beaupin: “We have learned that some of the side effects of treatment may occur many years after exposure ... even decades out from treatment.”
Follow-up care is important for addressing psychosocial side effects, too. AYAs may suffer from long-term distress due to failed relationships, unmet work goals and financial strain as a result of their treatment. According to 2016 study findings in Cancer Medicine, a third of AYAs report that cancer negatively affected their long-term career plans. Left unaddressed, these situations can lead to anxiety and depression that could negatively affect quality of life.
MOVING FORWARD TOGETHER
Patients and providers must work together to devise effective, attainable solutions to the problems AYAs face, according to Watson, Beaupin and Shah.
“We have a responsibility to try to identify therapeutic approaches that patients have the potential to be more adherent with,” Shah says. “In terms of trying to improve adherence, the key here is shared decision-making.”
When speaking with their doctors, AYAs should feel empowered to ask questions and ensure they fully understand their treatment, potential long-term side effects and available resources, both locally and online. If a particular treatment center lacks extensive resources, survivors can be pointed toward a social worker at a nearby adult, AYA or pediatric survivorship clinic. Teen Cancer America can help survivors locate medical facilities with AYA centers. The National Institutes of Health also lists a variety of resources.
“Even if you aren’t treated in that hospital, you can reach out to them,” Beaupin says. “Let them know what your insurance is, and at least (make) an appointment to (get) a summary of your treatment and learn what screening recommendations there are.”
If financial concerns lead to lack of follow-up, AYA survivors should realize they have choices, such as seeking out lower-cost labs for bloodwork and other testing. Most academic centers and survivorship clinics have resources available to help patients navigate insurance options and limitations. AYA treatment and survivorship programs can also suggest ways to deal with cost concerns, and some offer funds to help with different aspects of care, such as fertility preservation and transportation to treatment. Organizations including the Samfund and Stupid Cancer provide grants and other resources to help young adult cancer survivors recover from the financial impact of cancer treatment.
Uninsured AYAs should alert the survivorship clinic of their status, Beaupin says. Hospitals offer service centers to help patients in various financial and insurance circumstances find resources and ensure they receive medical care.
“There is a lot of effort going on for AYAs, but AYAs don’t even know that they’re a special population,” Beaupin says. “If you are a young adult diagnosed with cancer, the first thing you should know is that there are many resources. ... You are a special population whether you realize it or not, and that goes for being diagnosed, going through treatment and certainly the survivorship part. It runs the whole journey.”