Plight of a Young Cancer Survivor

When young adult cancer patients beat the disease, fear of recurrence and even post-traumatic stress disorder can become their new normal.

A patient receives chemotherapy at a hospital in Nice, France. (Eric Gaillard/Reuters)

In 2006, Andrew McMahon rented a charter bus, cleaned out the air filters and drove it cross-country alone. He was not a loner or a germaphobe. Just an eager 23-year-old with a dangerously weak immune system who feared he might die before performing his newest songs.

The Jack’s Mannequin singer weighed 115 pounds.

“I think there was a point of gross ambition where I used touring to escape the realities of what I was going through,” said McMahon, now 31, reflecting on the year after he completed intense treatments for acute lymphocytic leukemia (a cancer of the blood and bone marrow).

What he was going through? Wasn’t it done? Hadn’t McMahon “survived” cancer, “beat” cancer, been “cured” of cancer? From an outsider’s perspective, seeing that McMahon had been extensively touring would seem like the Californian had recovered from his illness, as physically and emotionally healthy as ever.

But as the nonprofit organization Stupid Cancer put it in its manifesto video, “We believe when the doctor says, ‘You’re cured, go home,’ that is not the end of the story.” In many ways, McMahon’s cancer story had only just begun. He had plenty of cancer-related complications ahead of him, from physical injuries like broken toes to years of post-traumatic stress disorder. It took McMahon nearly a year to increase his weight past 120 pounds and even longer for him to discuss his cancer experience with a therapist. At first, he wanted to forget that it ever happened by returning to his life of touring, a risky operation given that his stem cell transplant made him very susceptible to infection.

McMahon’s struggles aren’t rare among young adult cancer survivors. While McMahon says he has ultimately grown from his cancer experience, survival often comes along with a whole set of issues, some even unique to young adults.

Unlike older people, adolescent and young adult cancer patients aged 15 to 39, or AYAs as the National Cancer Institute (NCI) calls them, don’t often have many peers who have experienced cancer who they can seek out for friendship and encouragement. AYAs especially need support. About 70,000 AYAs get diagnosed with cancer in the U.S. each year, according to the NCI, and they’ve seen little to no improvement in cancer survival rates in almost 30 years. Among this group, cancer is the leading cause of disease-related death for women and second highest cause of disease-related death for men (after heart disease), even though the NCI reports that more than 70 percent of AYAs survive cancer and, of course, most people in that age group never get it. But those young people who do get cancer are often never the same again, as cancer can postpone or cancel the sort of life transitions young adults typically go through and leave even the strongest forever scarred.

At age 23, Shaylynn Grant was diagnosed with stage two squamous cell carcinoma (a type of skin cancer) on her tongue. The news came just weeks after she got married. Her plan to have kids right after marriage had to be postponed. Grant quit her job in property casualty insurance, had part of her tongue removed, and started speech therapy.

Six months after her initial surgery, Grant’s cancer recurred: a patient’s biggest fear. This time, stage three. She dropped out of school, where she was studying radiology, to undergo a combination of surgery, radiation, and chemotherapy. Six months after that, doctors found no evidence of cancer. Grant found no desire to work in radiology anymore, since regularly using the machines that detect tumors would make her worry  about getting cancer again.

“Instead of thinking of cancer once every couple of months, it’d be every day,” said Grant, who’s now a 28-year-old stay-at-home mom in Roanoke, Virginia.

That fear of recurrence is relatively common in young adult cancer survivors. As a Stanford University article put it, “One of the cruelest truths about cancer is that even after you beat the disease, it can still come back to kill you.” That’s because cancer can exist at levels too small to detect. Dealing with the fear of cancer recurrence is part of many people’s new normal, as retired cancer psychologist Dr. Andrew Kneier witnessed during his decades working at the University of California, San Francisco’s Comprehensive Cancer Center. Kneier, author of Finding Your Way through Cancer, said the fear of recurrence often does go away somewhere between five and 10 years after cancer treatment, but any single symptom can cause it to flare up until that point.

Even if cancer only comes once, it’s enough to damage someone’s finances. Some AYAs have to leave their jobs or go on medical leave to undergo treatment. Some are uninsured, underinsured, or older than 25 (the last year a person can be on their parent’s health insurance under the Affordable Care Act). A New York Times article reported that cancer drugs cost about $11,000 a month on average, with some exceeding $35,000 a month and $100,000 a year. With young adults often still trying to pay for college or land a well-paying job, these costs devastate, leading some AYAs looking to organizations like The SAMFund and CancerCare for grants and scholarships.

The impact of cancer treatment often goes well beyond finances and outlasts the loss of hair and nausea. Chemotherapy and radiation therapy can cause short-term effects, like lower hormone levels and headaches, and long-term effects, like memory loss (sometimes referred to as “chemo brain”) and a change of skin color, according to the American Society of Clinical Oncology. A couple years of lingering depression and long-term anxiety can also be side effects for both cancer patients and their spouses, according to a report published in The Lancet Oncology.

Grant, who is missing half her tongue from surgery and has a scar across her neck, deals with body image issues and insecurities. Her pronunciations leave people many times struggling to understand her. This makes her reluctant to meet people, though she says she used to be outgoing. She could tell people why, but then they may feel sorry for her, something she doesn’t want.

Grant also has limited neck and shoulder mobility, a complication of surgery that affects her daily life in multiple ways.

“It’s hard not to think about it when you can’t help your child across the monkey bars,” said Grant, who now has three kids.

Aaron Bramley, who was diagnosed with stage two Hodgkin’s lymphoma (a cancer of the lymphatic system) at age 27 and is now 30, underwent six months of chemotherapy and now lacks the energy, strength, and social life he had before cancer. He used to attend parties a lot but has become more introverted, something that happened during cancer treatment and is part of his new normal.

Bramley, who works in digital media in Austin, Texas, is also infertile, which happens to both men and women, from chemotherapy and radiation. Organizations like Livestrong offer fertility preservation before undergoing treatment, but some patients don’t know they have that option or decide against it at the time. Bramley took that offer, and is paying about $500 a year to store his sperm, although the possibility of passing on abnormal genes that can lead to cancer leaves him unsettled (5 to 10 percent of cancers are inherited, according to the American Cancer Society).

Bramley’s cancer diagnosis certainly fast-tracked the kids conversation between him and his girlfriend Alison, who he had been dating for a year at the point of diagnosis. Right before that talk, Bramley offered her an out—a break from the relationship until he finished cancer treatment. Alison found the idea of a break preposterous. They’re now engaged.

“Knowing we can get through that gives me the confidence that we can get through any other challenge life throws our way,” Bramley said.

After completing treatment, cancer left Bramley and Alison with one last complication: a portacath inserted in Bramley’s upper-chest (a medical appliance used in his cancer treatment for injections and drawing blood). It’s on his right side, where Alison used to nestle. Now it causes them both discomfort to have her head there. Switching snuggle sides that far into a relationship took some getting used to.

Cancer alters the love lives of many young adults, whether it’s a surgery that prevents sexual intimacy or lowers dating confidence. Thomas Edwards, founder and CEO of dating consultancy The Professional Wingman, has seen a variety of concerns and triumphs while coaching young adult cancer survivors. One of his clients feared women would be turned off by his cancer experience, viewing him as a romantic liability who’s bound to die young of secondary cancer. Some of his clients have had the “nothing to lose” mindset, whereas others have worried their dates would automatically categorize them as “sick” (a classification that sometimes takes years for young adult cancer survivors themselves to ditch). But Edwards sees an admirable determination in many of his clients who underwent traumatic experiences like cancer.

“A lot of people in these situations are stronger and more focused than normal and determined to embrace new challenges,” Edwards said.

Surviving cancer does, of course, have positive effects. Many young adult cancer survivors tell of how facing trauma and the prospect of death changed them. McMahon slowed down touring, drew his loved ones closer, wrote songs about his cancer experience that have inspired thousands and founded the AYA cancer advocacy non-profit Dear Jack Foundation. Grant says she cherishes her husband and kids more than ever, realized who and what’s important in life, and stopped worrying so much about little things. And Bramley says he realized just how amazing his fiancée is and learned how to better accept whatever outcome life throws his way.

Comedian Gilda Radner once said of cancer, “If it weren’t for the downside, everybody would want to have it.” From scars and emotional trauma to a lingering fear of recurrence, there’s certainly a downside to beating cancer that outsiders don’t always realize. But young adults often find the upside Radner spoke of, using their post-cancer life to prioritize loved ones and do good in the world.