Teens with cancer face special challenges
Never mind the nausea and extreme tiredness. For 17-year-old Jennie LePera of Wappingers Falls, the hardest part of her cancer treatment has been the hair loss it’s caused.
“I remember I was on FaceTime with my best friend, and I was just pulling it out,” said LePera, who was diagnosed with rhabdomyosarcoma, a cancer of the body’s skeletal muscles, last November. LePera said her friend told her to stop pulling her hair during the video chat.
“She was just like, ‘It’s OK,’ ” LePera said.
The National Cancer Institute reports about 70,000 adolescents and young adults 15-39 are diagnosed with cancer annually in the United States. Among those 0-19, the estimated total of new cancer cases in 2014 is 15,780, and for adults, 745,383 men and 711,113 women were diagnosed with the disease in 2010, according to the Centers for Disease Control.
For LePera, a shorter haircut made her feel better about losing her hair from her cancer therapies, but so have her wigs, including a standout red topper along with natural brown, blonde and blue wigs plus an up-do style.
“It’s just my way of coping with hair loss,” she said.
Jennifer Bates, owner of Cartier’s Salon in LaGrangeville, has fit many teens, including LePera, with wigs from devastating hair loss associated with cancer treatments.
With LePera, they went from natural to funky styles, with the teen rocking each look.
“She’d try on her wig, and she’d come flying out and she’d show my receptionist or one of the girls,” said Bates. “She be screaming, ‘Look at this!’ ”
Often, Bates said, teens try to hold onto their hair for as long as possible.
“In the Hudson Valley, teenage cancer is present,” she said. “We’ve had quite a few girls.”
Medical doctor Mitchell Cairo is chief of pediatric hematology, oncology and stem cell transplantation at Maria Fareri Children’s Hospital at Westchester Medical Center, where LePera is being treated for her cancer, and of which MidHudson Regional Hospital of Westchester Medical Center in Poughkeepsie is a part.
With adolescents and young adults, lymphomas and bone carcinomas or tumors are the most prevalent types of cancers, said Cairo, a 35-year veteran in his field and one of the world’s pre-eminent cancer researchers known for his work with pediatric oncology patients.
Cancer treatment for young people depends on the type of cancer diagnosed, with therapies sometimes aligning with those for adults or children. For instance, adolescents and young adults with acute lymphoblastic leukemia fare far better on childhood clinical trials than adult clinical trials, said Cairo.
But medical care is only part of it.
“The one thing that is different is that adolescents and young adults require a special approach, different from adults,” said Cairo, including for the type of cancer diagnosed. “They are in a period of life that is completely different from someone with cancer who is 40 or 4 years old.”
Emotional ups and downs, along with normal hormonal changes, plus school and peer pressures complicate the treatment of and recovery from cancer for adolescents and young adults. So does the risk-taking behavior that comes with their sense of invincibility, as does their tendency to fix on the immediate future, deterring their focus from long-term therapies. The ideal, then, becomes getting young people to comply with their cancer therapy, which could last from several months to years, without diminishing their sense of control.
“(We work) to balance out getting these young people to be part of the process, to buy into it, to understand the importance of looking at the next 70 years and not the next eight weeks and get them to comply with the recommendations,” Cairo said.
Parents, counselors and teachers must work together to support young people coping with a cancer diagnosis, with parents, especially, standing between rigid control and a free-rein sensibility.
“They’re wanting to be in a different place than being in the hospital,” Cairo said. “It takes a really comprehensive approach, separate from the cancer treatment they’re getting.”
Dr. Melissa M. Hudson, associate editor, childhood cancers of Cancer.Net, the patient information website of the American Society of Clinical Oncology, said myriad psycho-social issues affect young cancer patients, including their natural emphasis on body image.
“They’re isolated from peers and peer support when peers are a major focus,” said Hudson, who is director of the Cancer Survivorship Division at St. Jude Children’s Research Hospital in Memphis, Tennesee.
Young people with cancer, she said, put a hold on academic plans and vocational goals, just when they’re getting started. Future fertility, finance and insurance concerns often arise and, because the cancer therapies may follow pediatric or adult protocols, the consistency of the regimens may vary. Perhaps most tricky is young people’s natural push for independence, including how and when their cancer is handled.
“The family does need to respect the autonomy of that young adult,” Hudson said.
Joy LePera said from the start, she and her husband have been up front with their daughter about her cancer.
“Nothing is hidden from her,” Joy LePera said. “We tell her everything that’s going on. She’s the one that has to go through it, and if she didn’t want to go through it, we certainly weren’t going to do it.”
Before Jennie LePera’s diagnosis, she’d been losing weight for no apparent reason and limping. Her pediatrician, Sejal N. Dalwadi of the Children’s Medical Group in Hopewell Junction, referred her to a rheumatologist who then sent LePera to medical doctor Jessica Hochberg of Maria Fareri Children’s Hospital’s Oncology/Hematology Team. Days later further testing showed LePera had rhabdomyosarcoma, including cancer tumors along her spine, in her pelvic area and in her right foot. She also had compression fractures in her spine, leaving her bedridden for most of the 19 days her subsequent hospitalization required.
“(Jennie’s) attitude has been, ‘I’m beating this, and I’m going to graduate with my class,’ ” Joy LePera said.
Not only is she much better — her July assessment showed no tumors — but she’s also on track to graduate with her class next spring, the latter thanks to the hospital’s tutoring program and counselors at Roy C. Ketcham Senior High School in Wappingers Falls.
Even so, Jennie LePera underwent a bone marrow transplant in mid-September, after already having endured many different chemotherapies. The new treatment requires an extended hospital stay, but is her best chance of a complete cure, her mother said.
In the meantime, Jennie LePera, who loves to sing, dance and write, keeps her spirits up by journaling about whatever makes her happy, like Louis Tomlinson of One Direction, the pop singing group whose members she met at a concert in East Rutherford, New Jersey, through the Make a Wish Foundation.
Before the cancer, LePera thought less of herself than she does now, like that she was fat.
“I didn’t like myself before, and now I can’t say that I don’t like myself,” she said.
She’s gotten closer to her only sibling, an older sister, with whom she frequently talks, and enjoys her friendships. For now, though, it’s all about getting better.
“If I can do this, I can do anything,” LePera said. “The sky’s the limit.”
Karen Maserjian Shan is a freelance writer: mkshan@optonline.net
Coping with cancer, adolescents and young adults
• Talk with your doctors and nurses about how you’re feeling, including side effects.
• Talk with family, friends and trusted adults. They’re your best supporters.
• Talk with other teens with cancer. They understand your feelings and worries and may have advice for treatment side effects, school issues and talking with your doctor.
• Connect online. Talking online can be easier than talking in person but let your parents know first and be careful about giving out personal information. Ask a nurse or doctor about anything that sounds scary or unfamiliar. Find online groups and organizations at: www.cancer.net/navigating-cancer-care/teens/resources-teens
• Get professional help. A professional counselor, social worker or therapist can help you and your family talk through your feelings about cancer.
• Write it down or draw when you don’t feel like talking.
Source: Cancer.Net, the patient information website of the American Society of Clinical Oncology
On the Web
• Maria Fareri Children’s Hospital at Westchester Medical Center: www.westchestermedicalcenter.com/pediatric-oncology
• Cancer.Net: www.cancer.net
• National Cancer Institute, adolescents and young adults: www.cancer.gov/cancertopics/aya
• Stupid Cancer: www.stupidcancer.org/index.shtml
• Teen Cancer America: https://teencanceramerica.org