For young adults dealing with a cancer diagnosis, there is a unique set of challenges they may encounter. And for Chris Cann, creating a program dedicated to addressing these issues was always top of mind.
“They’re going through a cancer diagnosis at one of the most pivotal points in their life from a maturation standpoint,” he said. “So they could be in the midst of their education in college, they could be just starting a career or starting a family. They could be developing their personal identity.
“And so all of these combined lend this patient population to need extra support and specific support for them so that they can optimize their outcomes, not only from their cancer treatment, but from their mental health, physical health and financial health.”
Cann is a GI medical oncologist at Temple University’s Fox Chase Center, and he is now the director of the organization’s Young Adult Cancer program. Although the program is the first of its kind in Philly, he said, it has been needed for a while.
“Young adult cancer is on the rise, and it’s really been happening over the past several decades,” he said. “And when I say young adult, I say it’s really 18 to 39, but early onset is also included, and that’s up to the age of 50. Cancer is the most common cause of disease-related death in this age group and it’s often the least studied. And these patients are presenting at later stages, are often delayed in diagnosis and often have more aggressive disease and inferior outcomes.”
Multifaceted program
The program is important because of rising needs, said Anjali Albanese, a social worker at the center and a member of the Young Adult Cancer Center’s oncofertility committee, which helps patients preserve their fertility while undergoing cancer treatment.
“Over the past several years, the numbers of people being diagnosed with cancer that are falling in that young adult age range have exponentially increased,” she said. “And so what we noticed is there are unique needs that are sort of specific to this age range and population.”
According to research from cancer organizations, including the American Association for Cancer Research, cancer diagnoses for youth populations have been rising. One study shows that between 2010 and 2019, rates for 14 cancers had increased in at least one “early-onset” age group, defined as between 15 and 49 years old. Among the cancers with rising rates: breast cancer, kidney cancer, colorectal cancer and testicular cancer.
The Young Adult Cancer Program features many specific resources for adults between the ages of 18 and 39 – including education on fertility and sexual health concerns, relationship dynamics, and help navigating challenges like work and school scheduling.
When patients come in, Cann said, they are evaluated to see what support services would help them.
“Patients from any disease that they have from a cancer standpoint come in and we give them a needs assessment that asks what needs you have right now and making sure that we can help you with and help you navigate through this really tough time in your life to try to make sure that you can focus on the treatment of your cancer as best you can so we can help take care of the rest,” he said.
Albanese said one of the important pieces of the program is that it gives young patients a space to empathize with one another, which can be hard to find in their daily lives.
“So what we were being told by younger patients is that it is really isolating, and that they felt uncomfortable when they were coming in for treatment and all they saw were people that were at least 20 or 30 years older than them,” she said. “So, part of why we felt like this would be a great and important program to have is just to sort of help kind of close that gap a little bit, to really think about what the needs are for these people that are between the ages of 18 and 39.”
Adults at this stage of life often face very different challenges than older adult patients.
“When you get somebody who’s diagnosed in their 50s and 60s, they’re sort of past some of that,” Albanese said. “They’re established in their careers, they’ve already maybe met their significant other and started a family if that’s what they chose to do. And now you have people who maybe aren’t even in a relationship yet and they’re being asked, do you want to participate in fertility preservation?”
These support services are open to anyone outside of the Fox Chase or Philadelphia community as well, Albanese said. The program is meant to reach as many young adults as possible.
“I actually just had somebody from Ohio log on to the last group,” she said. “You don’t have to be a patient at Fox Chase to be able to participate in the support group aspect, because there aren’t that many groups like this out there. And the relief that you can see on people’s faces when they’re talking to someone who gets it in a way that maybe their friends don’t, their family doesn’t, the people they work with don’t, it’s just such an amazing experience.”
Eileen Seltzer is the chair of the program’s oncofertility committee. She said that many cancer patients may not think of fertility issues when they are diagnosed, but that they are important, especially as cancer treatments can affect one’s ability to have a child in the future.
“These young patients may not have started a family yet,” she said. “They could still be in college. They might be just finishing high school. They may not have a life partner yet and not know what they want to do, but that doesn’t mean that they don’t necessarily want to have a family in the future.”
Seltzer said many people are worried about their mortality when they are first diagnosed with cancer. Because younger patients have a much higher survival rate than older ones, it is important they consider life after cancer and things like fertility.
“When you get that cancer diagnosis, the first thing that hits you is, Am I going to die?” she said. “So it’s talking about survivability, especially for young adults with many of the cancers that they’re diagnosed with, over 80% will be long-term survivors.
“And then for that long-term survivorship, what does that look like in the future? The risk to your fertility is very high depending on your cancer.”
As part of the program, patients are connected with fertility specialists and local fertility centers within a day or two of an initial meeting. “Our goal is to get them in there and let them have this option if they choose to move forward [with fertility treatment] prior to their chemotherapy,” Seltzer said.
One issue is costs, as these options can be expensive. Many sperm and egg banks have a monthly or yearly storage fee, in addition to thousands of dollars in upfront costs. Seltzer said there has been some help through the community, but the center itself is looking into how it might fundraise and provide grants.
Cann also echoed the calls for better fertility preservation coverage. He said this can be a major barrier for young cancer patients.
“The problem is that the majority of patients are paying out of pocket, and so especially women are paying thousands of dollars to have fertility preservation,” he said. “And then not only that, but to maintain those eggs cryopreserved can be, like, $800 a month to preserve this, and so this could be financially limiting to many people.”
He said he hopes to continue advocating to state and federal representatives for insurance coverage over these kinds of fertility preservation treatments for cancer patients so they can focus on treatment, and not have to worry about the financial burden of treatment costs.
Challenges, big and small
Seltzer explained there are also lots of small challenges youth cancer patients may need to navigate, ranging from how to manage work to grocery delivery.
“This Young Adult Cancer program is really built to meet those unique needs based on where the patients are in life,” she said. “Are they working? Now they’re going to be out of work, and they may not have money built up to take that time off. How do you get connected to the local support that you need to help? Maybe if you’re not working, you need help with getting groceries. So how do we connect you to the local sources in Philadelphia and around the state that can help get you the things that you need?”
Another important goal of the program is to address misconceptions, she said.
“One of the first things you think of when you get a diagnosis of cancer is, ‘I’m going to be throwing up all the time and I’m going to lose my hair,’ ” she said. “And that’s not necessarily true, depending on what type of disease you have, so kind of dispelling the myths that they’ve heard from the past, letting them know that there are so many treatment options out there and getting them connected to resources, especially for their age range.”
Cann also said it was important for young adults to be aware and raise any concerns they might sense.
“And so for patients, if you feel like there’s something wrong, you know your body better than anybody else,” he said. “Go seek medical attention, and go advocate for yourself.”
To learn more or inquire about groups and treatments through the center, you can email the group.
The post Young adults with cancer have unique needs; new Fox Chase program tries to meet them appeared first on Billy Penn at WHYY.
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