Young Adults and Cancer

Kim Hicks has a laugh in her voice when she talks about her titanium leg. “Today I’m walking around in stilettos,” she says. “It feels totally natural. I don’t even limp. I have a t-shirt with a handicapped symbol on it that reads, ‘I’m just in it for the parking.’”

It wasn’t so funny when she was a sophomore in high school 13 years ago. Her leg had been hurting so badly it was difficult to sleep. Hicks finally went to the ER, where she was given an MRI. “Some volunteer wheeled me in, and a pediatric oncologist wheeled me out,” she recalls. “My mom saw his badge and said, ‘Why are you here?’ He took us to his office, and in one breath, he said ‘You have an 80% chance of dying, we’re going to amputate your leg, and this is going to be the worst year of your life.”

Hicks had Ewing’s sarcoma. The tumor had cracked the bone in her leg. A year of chemotherapy and one very experimental surgery later, she was equipped with a new bone made of titanium to which her nerves, tendons and muscles had been reattached. “It took me about a year to walk again,” she says.

Facing cancer at any age is terrifying, but facing it as a young adult can be even more so: young adults respond differently to treatment than both children and adults, are often still in school or in early phases of their careers, and are in many cases unequipped from a financial perspective to deal with costly treatments. Jack Bouffard had health insurance when he was diagnosed with Hodgkin’s lymphoma, but, he recalls, “I did drain my savings account. I come from a pretty big family, and my friends did a lot of fundraising for me. But I’ve always been seriously independent. It was hard for me to learn to rely on other people for the help I needed.”

Kate Goldberger, diagnosed at 17 with acute lymphocytic leukemia (ALL), encountered another issue faced by the young adult cancer community: fertility. Because chemotherapy and radiation can negatively impact fertility, it is recommended that patients undergoing treatment for cancer bank eggs or sperm for the future. But, as too many in the young adult cancer community know, oncologists often neglect this aspect of patient care until it’s too late.

“My doctor sought out a fertility specialist for me, and that was lucky,” Goldberger says. “But they weren’t doing the one thing that probably would’ve helped the most, which was freeze eggs prior to radiation and chemo. I’m 31, and while I may be able to carry a baby with hormone treatment, it’s almost impossible to have a baby on my own. I knew that was a possibility, but at this point in my life it’s become a reality. It’s really hard to have those choices taken away from you.”

Hicks’ cancer recurred when she was in college, forcing the spirited and outgoing young woman to face a second round of chemo and radiation. “The first time, I was debilitatingly shy,” she says. “The second time I was super-feisty. I was like, this is bullshit. I am in college. I have plans. Let’s get this done.” Hicks says that when she thinks about the unique issues young adults with cancer face, the first thing that pops into her mind from those years is dating. “Do I tell guys. How much do I tell them. I dated bald. This guy I’d been on two dates with came by once to surprise me, and I was doing dishes without my wig on.” She laughs. “That was the end of him.”

Bouffard faced a similar issue. His chemotherapy treatment was successful, but the physical side effects were brutal: neuropathy issues in his hands and feet, fatigue, excruciating pain and 40 pounds of weight gain. “I had to accept the fact that I couldn’t do everything,” he recalls. “The process primarily consisted of just trying to flush out all the crap that was in my system from the chemo and lose the weight I’d gained. I certainly wasn’t able to work” – Bouffard is a massage therapist – “and that was kind of a downer. But if I didn’t have energy for myself, I was totally unable to pass any on to anyone else.”

Goldberger describes herself as “the queen of chemo brain” – another side-effect of treatment, nicknamed “chemo brain” because of the fuzzy, altered mental state many patients experience. “I used to have a great memory,” she says. “Now if I don’t write something down, it’s gone. I always have a pad and pen. That’s really frustrating, especially for someone like me – I used to be really organized and efficient, and that’s gone out the window.”

At the age of 22, on the verge of graduating from college, Hicks learned that her cancer had recurred once more, and this time it appeared to have metastasized to her kidney. She was facing yet another of the difficulties often encountered by those who’ve survived young adult cancers, although she didn’t know it yet – at the time, it appeared she was dying, finally, after two successful bouts against the disease.

“They sent me to a specialist in San Francisco,” she recalls, “and his advice to me was to say my goodbyes. They’d removed the kidney, but clearly the cancer was resistant to the courses of treatment they’d tried, and there was nothing left to do but wait.”

Hicks was given six months to live. Then, out of the blue, she received a phone call from her oncologist, who had been reviewing her scans and concluded that she had been misdiagnosed. What they had thought was a recurrence of her Ewing’s sarcoma was, in fact, a secondary renal sarcoma resulting from her extensive radiation therapy. “Basically,” she says, “after five months of thinking I was dead, my doctor called me and was like, ‘Good news. You’re cured.’ And I was like, that’s anticlimactic!”

Today, all three survivors are young professionals who volunteer with I’m Too Young For This, an organization that provides a network of support for young adults facing cancer. “Medically, I’m back on the straight and narrow now, but I have a passion for advocating for young adults,” says Bouffard. “In a way, it’s a blessing I got sick because of all the people I’ve met and being able to spread the message and help others.”

Hicks, who is now applying to medical schools in hopes of one day becoming an oncologist specializing in young adult cancers, concurs. “Something this profound affects people in one way or another,” she says. “So some people become super depressed and introverted. I just became really feisty. No one believes me, now, when I say I used to be shy.”

Adds Goldberger, “Young adult survivorship is so critical, and education and support is what’s going to change everything for young adults with cancer. It’s that extra stuff we deal with that most people take for granted. Being with other cancer survivors who have been through what I’ve been through, having them understand, is so important.”

 

By Cat Vasko, editor of SU2C Mag.
Stand Up to Cancer