This article is the second of a two-part series on college students with cancer. This story focuses on the struggles that adolescent and young adult cancer patients face as they continue into their survivorship years, where the stark realities of their misunderstood needs become more clear.
Doctors told Ellise Martinez the shooting pains in her back were probably from having too many heavy books in her backpack. Or she pinched a nerve while working out.
Maybe she just slept on it wrong.
This is what her family doctor and a chiropractor said in March 2016. Both prescribed pain pills and sent Martinez on her way. The medication didn’t help, and the pain persisted.
Whatever the answer was, Martinez, a second-year in nursing, knew something was wrong.
In a matter of weeks, what Martinez describes as the most excruciating pain she’d ever experienced began spreading to her shoulders and shooting down her arm. Before long, it was dispersing into her chest.
Because of this pain, trips to the emergency room became normal, sometimes on a weekly basis. ER doctors routinely told her there was nothing they could do. In the meantime, Martinez began searching her symptoms online. It was a long shot, she thought, but maybe it was cancer.
With adolescent and young adult cancers, one of the greatest difficulties patients face is being taken seriously by doctors, said Josh Barkan, chairman of the NextGen James Ambassadors Society at The James Cancer Hospital.
“If a 25-year-old has a cough, a doctor’s first thought isn’t that it’s cancer,” Barkan said. “They are kind of a lost generation.”
A few months later, Martinez went to see a specialist, who noticed a severe fracture in her spine. Her T5 vertebrae was flattened like a pancake, something Martinez was shocked other doctors missed.
Another doctor Martinez saw told her there was nothing he could do for her; that she was too young for something so serious. It wasn’t until she mentioned her shoulder pain that the doctor became concerned. He ordered a full-body bone scan and referred her to a pulmonologist.
When checking in for her pulmonologist appointment, Martinez got a phone call from her primary care physician’s personal cell phone. She knew that couldn’t be good. Answering her phone, she was told her bone scan revealed her worst nightmare –– it could be cancer.
“The world stopped spinning on its axis,” she said.
The pulmonologist agreed cancer was possible, but was optimistic, saying it was not likely considering her age. But when he took a call from Ellise’s primary care physician in the hallway, he returned with tears in his eyes. The doctor confirmed that Martinez had an aggressive form of Non-Hodgkin lymphoma in her spine.
“He said he had never seen anything like this in his 20 years of work,” she said.
It took Martinez four months and thousands of dollars in ER visits for doctors to confirm a diagnosis she was convinced of from the beginning.
“I was relieved there was finally an answer, but I was so frustrated that every other doctor had missed it,” Martinez said.
Part One of this series of college students with cancer profiled Hanna Detwiler, a fourth-year in English, who beat cancer twice in her young life and how she sought balance between college and cancer. Read Part One here.
Cancer never truly ends
Martinez was ready to start an intensive four months of chemotherapy at The James by July 2016.
Just two months earlier, she was accepted into Ohio State’s nursing program. But because of her treatment and the rigorous course load demanded by her major, Martinez would need to take a medical leave from school and wait until Autumn Semester 2017 to begin classes.
Instead of school, Martinez filled her days with watching episodes of “The Office” on Netflix. Instead of moving back into the dorms, she stayed put in her room at her parents’ home in Dublin, which Martinez said was a new and strange feeling.
“There were times that I thought, ‘I wish a midterm was the biggest thing I had to worry about right now,’” Martinez said.
For her parents, though, it was a relief to have her home while she was going through treatment.
“It was more comforting to have her under our roof to take care of her,” Jesse, her dad, said. “We could be there for her at a moment’s notice.”
“We were just so scared she was going to die,” her mom, Barb, said.
When Martinez started to lose her hair, she lost it all –– her brown locks, eyebrows and eyelashes. She said she felt like an egg when she was bald. The only upside was not having to shave her legs.
At one point she was taking 20 pills every day, each one combating a different side effect of her chemotherapy: anti-nausea, antibiotic, stool softener, something for the pain, something to coat her stomach from all the different medications.
Martinez received her last round of chemo Oct. 27, 2016. Two months later, she got a text from her nurse practitioner with celebration emojis –– she was officially in remission.
It’s life or death and nobody knows if you’re going to live. You fight and you kick and you scream and you say, ‘No one is going to take it away from me.’ The flashbacks are all real. And then you’re in remission and people say, ‘So you’re good now, right?’ —Kate Houghton, president and CEO of Critical Mass, an advocacy group for adolescent and young adult cancer patients
But even after news of remission, Martinez said it’s sometimes hard to feel like her battle fighting cancer is totally over.
She still feels lingering back pain from time to time, a spooky kind of feeling, Martinez said.
Every three months for the next four years, she has to go back to The James for blood tests to make sure her cancer hasn’t returned.
Doctors told them there’s always a chance that Martinez’s cancer could come back. For her parents especially, the fear never truly goes away.
“You always have this feeling looming of, ‘What if it comes back? What if it comes back in another form of cancer?’” Barb said.
“I always worry at every time we go in for that three month blood work, and she goes, ‘Everything is good,’ it’s a major relief,” Jesse said.
One thing Martinez and her parents noticed is that people tend to assume she’s totally healthy now because she’s young. Last summer, a friend of Barb’s asked her how Martinez’s treatment was going. When Barb told her she was in remission, her friend’s reaction shocked her.
“She said, ‘She’s in remission now, she’s fine.’ She just dismissed it. I had no words for her,” Barb said. “I was enraged, I wanted to cry. How could you say that? I don’t want it to be dismissed.”
It wasn’t the only time this happened. Another friend asked what kind of cancer Martinez was diagnosed with.
“I had one friend tell me, ‘Oh, it’s only lymphoma. She’ll be fine,’” Barb said. “I haven’t talked to her since.”
Challenges of survivorship
Even after adolescent and young adult patients are told they’re in remission, a number of new challenges emerge when they become survivors instead of patients.
Fertility is one concern for adolescent and young adult patients coming out of treatment. A majority of these patients are left in the dark about how their treatment could affect their fertility until it’s too late, according to Critical Mass, an advocacy group for adolescent and young adult cancer patients.
It’s a simple conversation, said Kate Houghton, president and CEO of Critical Mass, but it’s one that is often forgotten or ignored. If conversations about fertility don’t happen before treatment, Houghton said patients run the risk of becoming sterile.
“It’s one conversation that can change the course of what their survivorship looks like,” Houghton said.
A 2015 study surveyed adolescent and young adult cancer patients diagnosed between 2007 and 2008 to assess whether discussions about fertility took place with their doctors. Of almost 500 patients surveyed, approximately 50 percent were never told how their treatment could affect their fertility.
There are surgeries doctors can perform to help prevent fertility loss, such as moving a patient’s ovary so toxic therapies can avoid harming the egg supply. Houghton said many providers don’t think to do the surgeries or talk with patients about their options.
“Providers make these decisions on behalf of the patient and that’s not OK,” she said.
Another issue often overlooked is mental health care for young adult survivors, specifically post-traumatic stress disorder.
The diagnosis radically changes your life and for months you’re focused on surviving. Then someone tells you to go live your life and you don’t know where to start. —Mary Connolly, inpatient social worker at the James Cancer Hospital, with NextGen Ambassadors
Houghton said most people think of military veterans and sexual assault survivors when they think of PTSD, not necessarily cancer patients. A 2017 study from the National University of Malaysia found that approximately one-fifth of cancer patients experienced PTSD several months after their diagnoses, many continuing to live with it years after.
Houghton, who was diagnosed with acute myeloid leukemia when she was 27 years old and has been cancer-free for five years, experienced this herself as a cancer survivor. Houghton was diagnosed with PTSD two years after her diagnosis.
“It’s life or death and nobody knows if you’re going to live,” she said. “You fight and you kick and you scream and you say, ‘No one is going to take it away from me.’ The flashbacks are all real. And then you’re in remission and people say, ‘So you’re good now, right?’”
According to Critical Mass, more than 40 percent of young adult patients report an unmet counseling need one year after diagnosis.
Houghton said a lack of awareness and education about the needs of young adult cancer patients and survivors cause these issues.
“People think because there are so few of us diagnosed in this community, we’re isolated and we’re the rare person with bad luck,” she said. “But no, there are 70,000 of us. That’s just not true.”
“I thought I was looking forward to my senior year, and now I don’t know if I’m going to be alive,” she said.
Her treatment was difficult. She got surgery at The James, but was on a clinical trial at Nationwide Children’s Hospital. She struggled watching her friends graduate and plan weddings while she was home recovering.
It was her transition from treatment to remission that Connolly, now 30, was entirely unprepared for.
“It feels like you’re being pushed off a cliff,” she said. “The diagnosis radically changes your life and for months you’re focused on surviving. Then someone tells you to go live your life and you don’t know where to start.”
She realized after entering counseling there was more she could do to help others like herself, young adults trying to navigate survivorship.
Connolly, an inpatient social worker at The James, works with the NextGen Ambassadors, a group of young professionals that raises awareness about adolescent and young adult cancer.
The group, which has more than 50 members, also works as a support system for young adult survivors. Connolly said there are about 10 survivors who meet regularly to talk about life and be there for one another. Community and relating with others the same age is crucial, she said.
“I was the youngest person by 15 years in my support group,” Connolly said. “They were all talking about not being able to see their grandkids grow up, where I was 23 and wondering if I’ll ever have kids.”
The NextGen Ambassadors also do fundraisers throughout the year to benefit adolescent and young adult cancer research. In 2016, its Mac and Cheese Festival raised more than $65,000 to benefit four different research projects.
With millions of dollars raised for pediatric cancer research each year, Houghton said initiatives like it are important.
“Universities do a lot of dance-a-thons and they all support pediatric cancer. But there are peers there that will never see the results of that funding because they aren’t treated in a children’s hospital,” she said.
The James is working to improve its own programming for young adult patients. Maryam Lustberg, an oncologist and director of survivorship at the hospital, said she is working with a team to create specific programs and support groups for these patients to foster a sense of community.
“The programming is already in place, but younger patients might not want to go to a class with someone in their 50s,” Lustberg said.
In addition, The James is in the process of developing an adolescent and young adult clinic for hematology patients, like Martinez.
I knew from the first day that something was wrong with me. You need to advocate for yourself — especially when it comes to your health. You know your body better than a doctor knows how you feel. – Ellise Martinez
Bhavana Bhatnagar, a hematologist at The James and one of the doctors working on the clinic, said she envisions a “one-stop shop” for these patients.
“It’s a clinic where young folks with cancer could come and receive treatment but also get access to resources like counselors, fertility support, physical therapy and social opportunities,” Bhatnagar said.
She said she hopes the clinic will have a space and staff at The James as soon as late summer or early fall.
“The young adults that I take care of are a fantastic group of people,” she said. “It’s important for them to feel connected to other people and for them to have that avenue to grow into healthy adults.”
“You need to advocate for yourself”
In her high-school biology teacher’s classroom, Martinez sits on a stool before a class of teenagers. It was just a few years ago, before the cancer and chemotherapy, that she was sitting in their spot.
Her former teacher, Roger Rabold, asks Martinez to come back every year to talk with his classes about her experience. As Martinez shares her journey from diagnosis to remission, she makes two points clear.
The first thing is for all the students to learn to be their own advocate. Martinez said she saw negligence with every doctor she encountered leading up to her diagnosis. Doctors, she said, don’t take young people seriously, and being persistent was how she got answers she needed.
“I knew from the first day that something was wrong with me,” she said. “You need to advocate for yourself — especially when it comes to your health. You know your body better than a doctor knows how you feel.”
The second is more profound, at least to Martinez: that surviving cancer so young has changed her outlook on life.
Before cancer, her worst medical experience was a broken arm in fourth grade. Now, Martinez said she’s more aware of her own mortality and the “invincibility complex” she said plagues so many people her age. Life is short, she said, and being sick put into perspective what really matters to her.
“I’m thankful that I’m even in this position,” she said. “All I wanted was to be normal — to go to school, have a job, hang out with friends.
“I’m now so grateful for these seemingly normal things, like that I’m alive.”