At age 37, Kathy Giusti was happily married with a one-year-old child when she heard the grim words from her doctor: “You have cancer.”
“The words hit you like a punch, the fear and sadness is immediate for you and your loved ones,” Giusti said.. “And worse, no one prepares you for this. You don’t know where to turn.
He was diagnosed with multiple myeloma. In 1996, he explained, when people with this diagnosis were on average three years old. He could see a look of empathy but hopelessness in the person he was telling the story to. He knew he was racing against a clock he couldn’t control. It felt like a death sentence, she said.
As Giusti struggles with his fate, he realizes that there is more to this battle than a diagnosis. There are many mental and emotional burdens to navigate – from telling your children about the diagnosis to finding the right doctor. While she was fortunate to receive a stem cell transplant from her identical twin sister that helped save her life, her experience is a resource for those managing complex emotional and medical decisions after a cancer diagnosis.
“I think the biggest challenge for me was not just the cancer diagnosis,” she told me fortune. “This is a fatal cancer diagnosis.”
For more than 20 years, Giusti has worked as a leader in the cancer research space, and as a mentor and coach. She founded the Multiple Myeloma Research Foundation in 1998 to help people navigate the diagnosis, providing education and nurses for support. The foundation developed a tissue bank and genome biobank to drive forward research and has raised more than half a billion dollars, helping the development of 15 new therapies.
Cancer is the leading cause of death, according to the World Health Organization (WHO), responsible for more than 10 million deaths in 2020. And today, those under the age of 50 are diagnosed with cancer at a higher rate, researchers report. This year, more than 35,000 people will be diagnosed with multiple myeloma, and more than 12,000 will die from it, predicts the American Cancer Society.
Giusti often receives calls from people immediately after the diagnosis. They sounded scared. She shares her own experience of bonding while also explaining resources, trusted websites, and when relevant, the frustrations of getting conflicting advice from doctors and loved ones. He was also the source for famous names like Tom Brokaw and Dick Parsons.
“I need to take 72 hours to process everything”
Being at the forefront of research allows Giusti to help trainees understand which resources to rely on—and which to leave behind.
“He goes straight to the computer and starts putting things in and it cuts through a lot of rabbit holes and spaces that might not be useful to him,” he said.
As Sahar Paz, a cancer survivor and CEO of Own Your Voice Strategy, a brand strategy firm, says, “don’t Google without direction,” whether that direction comes from someone who has been a shoemaker or a doctor.
Paz learns the importance of validating the trauma of a diagnosis—and the mental health impact of significant life changes.
“As a stage 3 cancer survivor with an aggressive cancer, what I want is for me to take 72 hours to process everything before making a decision on a treatment plan,” he said, adding that it was important to slow down and breathe.
Education, health plans, and teams
Giusti wants people to know that a support team is important, especially for those who continue to struggle like her. She was diagnosed with early stage breast cancer after surviving multiple myeloma and is currently undergoing treatment.
“It’s a gift to say that I need counseling, therapy, or support,” she said. “You don’t have to feel like it’s something you have to do on your own.”
After receiving the results, Giusti also recommends that people prioritize their treatment team. That means knowing which places specialize in different types of cancer and being open to receiving help from your loved ones. It can look like someone tagging along to your appointments to take notes, driving you to and from the hospital, managing your health accounts, or picking up your kids from school so you can focus on your care.
“You have to give people who care about the order,” Giusti said. “Usually gifts to help. It’s not a burden.”
Even after the cancer is gone, the fear of the unknown can remain, making it increasingly clear to Giusti that people continue to face mental health challenges after a life-threatening or life-changing diagnosis. And he hopes people don’t have to feel alone.
“You’re always walking on eggshells when the next diagnosis comes, like, oh my god, do I have to ride this roller coaster again… You still have knots in your stomach waiting for your test results,” she said. “And you wonder what’s going to happen. I’m still doing it every eight weeks for myeloma.
To manage some of this uncertainty, he encourages people to have an ongoing relationship with their primary care physician, who knows their family history and potential risk factors that may warrant specific diagnostic tests. This is important for prevention and for people with certain diagnoses.
An ongoing relationship with your doctor can also help remind people to schedule an annual mammogram or colonoscopy, for example. Mammograms prevent up to 40% of cancer deaths and depending on age, race/ethnicity, and risk, people may need different types of screening.
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