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When Alison Quilici experienced her first mind-numbing headache, she wasn’t too worried. After all, migraines ran in her family — and her identical twin sister also had them.
But her headaches got worse. And in October 2015, the pain hit her so hard that she threw up and insisted that her doctor — who first diagnosed her symptoms as a sinus infection — give her a CT scan.
Moments later, she found herself staring at a not-so-subtle, golf-ball-sized blob on her CT scan. The pathology report later showed it was Grade 3 anaplastic astrocytoma — a malignant brain tumor that strikes less than one person out of 100,000.
“I felt invincible — like no I don’t have cancer, this isn’t me we are talking about,” said Ali, 25, of San Jose. Her family has no history of cancer on either side, and her sister tested and showed no signs of the disease. Ali, meanwhile, was told if she did nothing, she had only one year to live.
So Ali and her sister — inseparable as always — fought the disease together.
Ali underwent a craniotomy, vigorous chemotherapy and radiation while her twin, Sara, played a large role in organizing this weekend’s CancerCon — a conference held in Denver for young adult cancer survivors, caregivers and health care professionals.
Beaming with the strength of two, the twins hope to inspire and provide support for others who have been affected by young adult cancer.
Cancer affects about 70,000 young adults between the ages of 15 and 39 every year, according to the National Cancer Institute. It is the number one killer of young adults, excluding violent accidents.
A lack of awareness, research and funding surrounds this age group, said Matthew Zachary, a young adult cancer survivor and founder of Stupid Cancer — the nonprofit organization that sponsors CancerCon and aims to support young adults with cancer.
Young adult cancer doesn’t even have a medical sub-specialty — doctors either specialize in pediatrics or adult care. According to the American Cancer Society, improvements in survival rates and quality of life have been slower for this age group compared with others.
The twins first attended CancerCon last year, and after their “life-changing experience” they became actively involved in raising cancer awareness among young adults. Sara joined the steering committee this year and plans to serve for the next three years. Ali will continue to tell her story to other cancer survivors just as she listened to others the year before.
The twins touched many people at CancerCon, including Texan Peter Quinn, or as they call him, “Q”. Last year was the first time Quinn attended CancerCon, and he felt a bit out of place as a 51-year-old, without having experienced cancer, and wearing a black tag that designated him as “other.”
“Those two young ladies took me under their wing,” said Quinn, who with his wife owns a pharmaceutical market research consultancy, PJ Quinn Inc., in Azle, Texas.
Quinn and his wife decided to pay all of the twins’ expenses to attend CancerCon this year. “I just wanted to say thank you,” Quinn said. But more importantly, “I wanted to see them again.”
It’s been a long journey for Ali and Sara — or Scoop and Doop — as their father calls them.
When they were infants, they had their own language. “It was so weird because they’d have full-on conversations and they wouldn’t say a word, they’d just go ‘huphadahuphadahuphada,’” said Joe Quilici, who would hear them begin to whisper after putting them to bed in the same room in two separate cribs in their small Santa Clara home. “It wasn’t just toddler babbling. They would take turns — it was a conversation.”
When the twins were 4, their parents divorced and their father took custody, raising them as a single parent. “The three of us have been a team for a very long time,” the father said.
As they were growing up, the twins stayed in the same room and shared the same clothes and friends.
Their dad coached basketball for almost 30 years. Both Sara and Ali played varsity volleyball and basketball for San Jose’s Del Mar High School all four years.
So when they graduated from high school and Ali moved to Sacramento to attend Sacramento City College and Sara moved in with friends and began San Jose City College, the three of them were separated for the first time.
“I cried the entire first week I was alone,” Sara said.
The morning after Ali found out about the mass, Sara drove up to Sacramento in the middle of the night and went with Ali to her first appointment with a neurosurgeon — and every appointment since.
After Ali found out it was cancer, the doctors couldn’t tell her what her life expectancy was.
Ali’s tumor is most common in older people, and their life expectancy after diagnosis averages 10 years. Doctors told Ali this wouldn’t be the case because of her youth, but they couldn’t give her an estimate because they just didn’t know, explaining that uncertainty is common in young adult cancer.
“There’s just not enough data on it,” Ali said. “Every tumor is different depending on the patient and age.”
Sara remembers the day of Ali’s craniotomy. She and her father walked into the recovery room, and Ali was in a bed 40 feet straight ahead of them. “It was a long surgery, we were all very tired and she just goes ‘Hi guys!’ and waves at us,” Sara said. “My dad and I were literally on the verge of tears.”
Today, it’s a different story. After 42 days of chemotherapy and 33 days of radiation, she finished her treatment last August. In November, the doctors told Ali that her brain scans didn’t show any more evidence of disease. Even so, she knows the odds are against her.
“It’s almost guaranteed that as some point in my life the tumor will come back,” Ali said. “Let’s just hope that it’s in 50 years and not five.”
She’s now part of a study at UC San Francisco, where she gets detailed scans of her brain every couple of months. As time goes on, her scans will get more staggered. The study’s goal is to reclassify different types of tumors based on more evidence from patients. She maintains a stable “no disease evident” status and plans to go back in the fall to finish college, most likely at Cal State East Bay.
Looking at her sister, Ali said, “Nobody should be allowed to have cancer, unless they have a twin.”
No father imagines that 20 years after collecting his daughter’s teeth he will be saving all the head staples from his daughter’s brain surgery.
Joe Quilici reached out his arm, which has two bracelets. One says “Ali’s army,” the other “Scoop’s squad.”
Nobody is on the sidelines. They are out in the field together.