Specialists Help Young Adults Battling Cancer
By Catherine Duncan
At age 25, Jerika Alaquinez of San Antonio suffered from pain in her right leg for about six months. The busy mom of a 6-year-old daughter and an 18-month-old son kept thinking it would get better.
She went to several clinics and hospitals trying to find out why the pain wouldn’t go away. At each medical facility, she was told they couldn’t find anything wrong with her leg.
On Aug. 18, her husband took her to University Hospital because she was in severe pain, and the leg had become very swollen. “I could no longer walk on it,” Alaquinez said. “The emergency room doctor ordered X-rays, and they found a mass at the very bottom of my femur.”
Because a pediatric-type cancer was suspected, the ER doctors called in their colleagues with the Adolescent and Young Adult (AYA) Cancer Program, a collaboration of the Long School of Medicine at UT Health San Antonio and University Health System (UHS). In-patient treatment is provided at University Hospital, and outpatient care is provided at both University Hospital and the Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center.
She was admitted to the hospital and “they did an MRI of my entire body and found two spots on each lung. The cancer had already spread.” A biopsy was performed two days later, and the young mother was diagnosed with osteosarcoma, the most common type of bone cancer for those under the age of 25. Just three days later on Aug. 23, she started her first round of chemotherapy. For three months, she will undergo chemo every two to three weeks.
“The pain and swelling have gone down. The chemo is making the tumor smaller,” Alaquinez said. “I have been nauseous, but there is medicine that helps. Losing my hair was tough at first. But, an experience like this teaches you what is important in life. Hair really isn’t.”
At the time of this interview, she was going every Tuesday and Friday for follow-up appointments with her oncologist, Aaron Sugalski, D.O., associate professor of pediatrics for UT Health and medical director of the Pediatric Blood and Cancer Center, a partnership of UT Health and UHS. Each time she has chemo treatment, Alaquinez stays at the hospital for four days.
She stays in the AYA Blood and Cancer Unit with other patients who are ages 18 to 39. The specialized unit opened in December 2018 and is dedicated solely to young adults battling cancer and blood disorders.
Dr. Sugalski said the AYA program is able to offer a multidisciplinary team approach to each patient. In Alaquinez’ case, he is working with Rajiv Rajani, M.D., UT Health orthopaedic surgeon, who will perform the surgery to remove the tumor. After surgery, she will receive care from a physical therapist and a prosthetist if her leg must be amputated.
“These patients usually have a nine-month treatment course. After surgery, Jerika will need approximately 20 weeks of chemotherapy,” he said. “The oncologist, surgeon and prosthetist will closely monitor her every three months for the next three years. Through this entire process, patients also have access to our pycho-social team. The patients and their families can see our clinical psychologists to help them through this difficult experience.”
Allison Grimes, M.D., AYA program co-director and assistant professor/clinical of pediatrics, explained the National Cancer Institute created the AYA term for adolescent and young adults, ages 15 to 39, who are diagnosed with cancer. The NCI deemed them a health disparity population.
“Their rate of survival improvement has lagged behind pediatric patients under 15 and adults 40 and above. Along with that, they also are the most underrepresented group in clinical trials. The lack of clinical trials and access to them is affecting survival rates,” she said.
According to the NCI, about 70,000 young people are diagnosed each year. This figure is six times the number of cancers diagnosed in children ages 0 to 14.
Dr. Grimes said in 2014 after UT Health’s pediatric oncology and hematology team moved to University Hospital, they started discussing with adult oncology colleagues how they could all work together to better care for AYA patients.
“First, we determined there are on average 150 new AYA cancer patients diagnosed each year in the hospital system. We know their treatment goes on for several months to several years,” she said.
“Our number one shared goal was to improve access to clinical trials for AYA patients who enter our system. Previously, their participation in clinical trials was far less than that of pediatric patients. They may have gone to a provider who wasn’t aware of the pediatric clinical trials or didn’t understand that despite their age they were eligible to enroll,” Dr. Grimes explained.
The team created a one-page AYA referral in-take form that they provided to primary care providers, ER physicians, and other faculty and staff so they would know who to call for an AYA patient with a particular cancer.
“The form includes an algorithm when you add the age plus the diagnosis. It tells the health care provider who to call first—pediatric or adult oncology. The algorithm also finds open eligible clinical trials for the patients. That way we aren’t missing an AYA with a certain type of cancer who is eligible for a pediatric clinical trial,” she said.
In addition to improving the diagnosis process and clinical trial inclusion of the AYA group, the team decided to put all patients in one unit instead of rooms throughout the hospital. Previously, the young adults could be housed in units with geriatric or pediatric patients.
“The idea is for the patients to have a place where they can be surrounded by other young adults,” she said. “They are able to support and visit with each other. Because they stay in the unit for multiple days for treatment, this gives them a social environment.”
Although a cancer diagnosis is difficult for anyone, it is particularly stressful for young adults who are attending high school or college, starting their careers, or raising young families, Dr. Grimes said. Children and older adults don’t have these responsibilities to deal with in their lives, she added.
“Some of these patients must stay in the hospital for days or weeks at a time. This is a very difficult time to be removed from your life. This age has much higher rates of depression,” she said. “For the patients to be able to look up and down the hallway and see other young adults, they are able to have a sense of community.”
To improve services provided to patients and make their time at the hospital a little easier, Dr. Grimes and Co-Director Elizabeth Bowhay-Carnes, M.D., assistant professor/clinical of medicine, collaborated with University Hospital and applied and received grants from the Buddy Holly Educational Foundation and Teen Cancer America, founded by rock musicians Roger Daltrey and Pete Townshend of The Who. Teen Cancer America’s donation of $296,000 to the AYA program allowed the program to hire a dedicated social worker, a nurse navigator and the creation of a lounge where patients can meet to share experiences and support each other.
The lounge’s official opening in September 2019 was attended by Maria Elena Holly, widow of the late Texas-born singer and songwriter. The lounge features massage chairs, board games,
video games, a coffee station, and art project packets.
“I think AYA patients have long been an underrepresented and underserved population in this community. They are finally finding their voice. I’m glad we are recognizing that they have unique needs and that we are addressing those needs.
“We hope to see over the years an increase in the survival rate and in their quality of life because of this program,” Dr. Grimes added.