On one of their first dates, Sabrina Fuoco posed this question to Garrett Dunn:
“What about if I got breast cancer and I had to have a double mastectomy — how would that be?” Fuoco recalled asking Dunn over that 2011 dinner.
Having befriended her several years earlier, he knew the query was not an odd or alarmist one. He told the woman across the table that it would not change his feelings.
“And we just celebrated our first (wedding) anniversary,” Fuoco says.
What Dunn knew during that early romance, however, was that his new partner, then a 30-year-old law student, had been hit by serial cancers — four different kinds since age 3.
And he also knew — as did a phalanx of family, friends and physicians — that she had faced that perverse battery with courage and abiding grace.
“She has always remained glowing and positive, never showing the huge weight that must constantly be on her shoulders,” says oncologist Dr. Abha Gupta, director of the Princess Margaret Cancer Centre’s adolescent and young adult program.
“Seeing her is inspirational, and reminds me of the strength that people are capable of expressing,” says Gupta. She is treating Fuoco’s latest bout with the disease, her fifth — diagnosed as incurable two years ago.
This time, it’s a metastatic cancer: a haywire scattering of cells that has spread to her lungs and is virtually unstoppable. Fuoco’s CT scans, taken every three months, have shown relentless tumour growth.
“It’s like this ticking time bomb inside of you,” says Gupta. “I can’t imagine being on her side” of the stethoscope.
Indeed, she says, Fuoco’s current cancer, a relapse of an earlier sarcoma, was so unwieldy that the doctor advised her patient to forgo chemotherapy to preserve her hair for her wedding, which was coming up.
“We didn’t give her chemo; she didn’t lose her hair. I’m sure she looked beautiful for her wedding. And still today you would look at her and say, ‘I don’t believe you have cancer,’ because she looks so well.”
No one has any idea how long Fuoco may live.
Yet here she is in her parents’ North York home, turned out and smiling on a late summer day, the picture of health that Gupta describes.
She is blending vitamin-rich smoothies and chatting amid the sculptures and Catholic icons that decorate her mother’s Italian kitchen — shining with her own spirit of determined survival.
And later, she’s in the basement, banging out her blog — Cancer Girl Smiles — that advocates for research, encourages others with the disease and bears the tag line “Today I decide to live.”
Many wonder how she has stuck to that motto all her life.
“Even at doctors’ appointments, the doctors seemed fascinated with that question,” Fuoco says. “They couldn’t understand how I could keep picking up the pieces.
“But to me that was odd, because there was no other way. Either I was going to let cancer just define me and ruin my life and just let it be what it was going to be, or I was going to try to muster up a smile and pick up those pieces and go on.”
Fuoco, 34, credits her parents’ support as key to her resilience.
But for Marcella and Frank Fuoco, who still attend each hospital appointment, the encouragement they offered their only daughter hid their anguish. Each diagnosis, her mother says, brought “the whole world crashing down on us.”
Past ordeals have helped steel them for the current fight.
“We will give Sabrina hope and strength because this is not the first time.”
If Fuoco asked her if she should buy plane tickets for next year, Gupta says she would not discourage her. But really, the doctor says, she does not know the right answer.
Fuoco herself is no Pollyanna. Cancer, she knows, has almost certainly stolen her future and cast “grim shadows” over much of her past.
“The ‘why me’ feeling? I’m not going to lie and say that didn’t happen,” she says. “I felt I couldn’t really do anything in my life for more than a few years because cancer was going to be there.
“It was almost like my life was interrupted at every milestone. At every major turning point in my life I had cancer rear its head.”
Setting ‘mini-goals’
Fuoco is not done with life — not by a long shot.
But with metastatic cancer, her planning windows shrank from years and decades to the three-month intervals between lung scans.
“Before, I was always a very big planner and an organizer and I would plan out goals and the future,” she says. “And now I find myself trying to still do that but it’s so much more difficult. So I do little mini-goals and mini-milestones and anything I can incorporate into the next three months.”
Her plans revolve mainly around two things: her health and helping others.
Told that chemo and radiation therapies could do more harm than good right now, Fuoco has sought alternative strategies.
“I’m taking it upon myself to kind of try to heal my body on my own,” she says, while still looking at traditional medicine or trial drug options as backstops.
Her personalized cancer regimen has included supplements and high-dose vitamin and herbal remedies, including mistletoe, to boost her immune system. But after reading “a dozen cancer books,” her main focus has been on food.
“I’ve completely altered my diet,” she says. “I don’t eat meat, dairy, gluten, sugar — I’ve cut out pretty much everything.”
A juicer and blender are Fuoco’s key tools as she experiments with raw vegetables and fruit. “That is like a full-time job because all day I’m juicing and cutting up vegetables.”
Fuoco does leave time for advocacy work, pushing for more funding and better care for metastatic cancer patients, especially the young. She works with Princess Margaret’s adolescent and young adult oncology program, sitting on an advisory committee that is helping pair youthful cancer survivors with younger patients who have been newly diagnosed.
She is devoted to her blog, which she began several years ago to update friends and family on her condition. It was soon read by cancer patients across the continent, many asking for advice or inspiration.
Fuoco now spends two to three hours a day writing and answering questions about her treatments and coping strategies, and soothing the anxieties of the dozens of people a week who contact her.
Fuoco’s ultimate goal is to create a foundation that could raise awareness and research funding for metastatic cancers.
As she busies herself with advocacy and survival, Fuoco has one keen regret. “I feel bad because I wanted to contribute so much” to the marriage financially, she says.
“The burden of the work now is on him, because I’m just trying to get better and heal myself if I can — because then I can accomplish great things.”
Challenges at every stage
A syndrome of rare power
The syndrome is caused by a mutation in a gene known as Tumour Protein 53 (TP53), which sits on chromosome 17 in the human genome. The mutation is typically an inherited trait, passed from a parent to his or her offspring. But Fuoco’s mother and father have tested negative for the mutation. So in her case, it likely resulted from a tragic chance “rewriting” of that DNA segment in a sperm or egg cell or at conception.
The risks that a person with the syndrome will develop cancer in her lifetime are astronomical. Some 75 per cent of males with Li-Fraumeni and virtually 100 per cent of females will have one or more bouts with the disease.
TP53 is known as a “guardian” gene and in its normal configuration, it helps prevent genetic mutations and control cell division throughout the body. Cancers result from genetic mutations that cause cell division to run amok in the tissues they attack. That means people with a mutated TP53 lack the protections it offers from both these cardinal elements of tumour formation and are more susceptible to cancers, particularly of the brain, breasts, glands, blood, bone and soft tissues.
The syndrome is exceedingly rare, affecting about 500 known families worldwide. Yet the condition may have an outsized influence on cancer research, says Dr. Raymond Kim, a medical geneticist at Princess Margaret. Kim says that some 90 per cent of cancers arise out of chance mutations in a single cell, be it in the liver, brain or a smoker’s lungs. But Kim says many of these “sporadic” tumours — likely more than half — involve mutations to the same TP53 gene associated with Li-Fraumeni.
“It plays a central role in all types of cancers,” Kim says, and therefore is a key gene to study. The hereditary forms of the gene mutations like Li-Fraumeni “are probably the lowest-hanging fruit. These families are the most informative and by studying them and taking care of them, we can learn about those other sporadic cancers.”
Medications that could restore or mimic the protective functions lost through TP53 mutations would likely benefit countless cancer patients. But such therapies are nowhere on the horizon. In the meantime, Toronto’s Hospital for Sick Children led the 2011 development of a cancer surveillance program that has been helping children with Li-Fraumeni and similar predisposing conditions. The program calls for the genetic testing of children whose families have abnormally high histories of cancer. Those kids who test positive for a cancer predisposition will be subjected to rigorous screening for tumour development. The surveillance has led to the early detection and surgical removal of incipient cancers, often eliminating the need for harsh chemo and radiation treatments.