She survived the cancer. Now she coaches patients through their trauma.
At the age of 37, Kathy Giusti was happily married to a one-year-old when she heard the somber phrase from her doctor, “You have cancer.”
“The word hits you like a fool, the fear and anguish are immediate for you and those who love you,” says Giusti. “And worse, nothing prepares you for it. You don’t know where to turn.”
She was diagnosed with multiple myeloma. It was 1996, she explains, when people with this diagnosis had an average of three years to live. She could see empathetic but hopeless looks in the people she told. They knew she was up against an uncontrollable clock. It felt like a death sentence, she says.
As Giusti grappled with her fate, she learned there was more to this fight than the diagnosis. There were numerous mental and emotional burdens to deal with – from notifying the children of the diagnosis to finding the right doctor. While she was fortunate to receive a life-saving stem cell transplant from her identical twin sister, her experience has led her to become a resource for those who navigate the complex emotional and medical decisions following a cancer diagnosis.
“I think the biggest challenge for me wasn’t just the cancer diagnosis,” she says wealth. “It was the diagnosis of such a deadly cancer.”
Giusti has been a cancer research leader, mentor and coach for over 20 years. She founded the Multiple Myeloma Research Foundation in 1998 to help people make diagnosis by providing patient education and nursing staff to support them. The foundation developed a tissue bank and a genomic biobank to advance research and has raised over half a billion dollars to support the development of 15 new therapies.
According to the World Health Organization (WHO), cancer is one of the leading causes of death, responsible for more than 10 million deaths in 2020. And today, people under 50 are more likely to be diagnosed with cancer, researchers report. This year, over 35,000 people will be diagnosed with multiple myeloma and over 12,000 will die from it, the American Cancer Society predicts.
Giusti often gets calls from people immediately after their diagnosis. You sound scared. She shares her own experiences of building a bond while explaining trusted resources, websites and, where relevant, the frustration that comes with receiving conflicting advice from doctors and loved ones. She was also a source for big names like Tom Brokaw and Dick Parsons.
“It should have taken me 72 hours to process everything”
Being at the forefront of research has enabled Giusti to help the people she coaches know which resources to lean on — and which to forego.
“They immediately go to the computer and start typing things, and it’s going to take them through so many rabbit holes and spaces that might not be particularly helpful to them,” she says.
As Sahar Paz, a cancer survivor and CEO of Own Your Voice Strategy, a branding strategy firm, puts it, “Don’t google without direction,” whether that direction came from someone inside your skin or from a doctor.
Paz learned the importance of validating the trauma of the diagnosis — and the mental health implications of such a significant life change.
“As a stage 3 cancer survivor with an aggressive cancer, I’ve learned that I should give myself 72 hours to process everything before making decisions about my treatment plan,” she says, adding that it’s important to slow down become and breathe.
Education, a health plan and a team
Giusti wants people to know that a support team is essential, especially for those who have constant struggles like her. After surviving multiple myeloma, she was diagnosed with early-stage breast cancer and is currently undergoing treatment.
“It’s a gift to say that I actually need counseling, therapy or support,” she says. “You shouldn’t feel like you have to do it all on your own.”
After getting the results, Giusti also recommends people prioritize their care team. That means knowing which places specialize in different types of cancer and being open to getting help from loved ones. It can seem like someone is coming to your appointments to take notes, drive you to and from the hospital, manage your health accounts, or pick your kids up from school so you can focus on your care.
“You have to give the people who are important to you their marching orders,” says Giusti. “It’s usually a gift for them to help. It’s not a burden.”
Even after the cancer is gone, fear of the unknown can linger, making Giusti even clearer that people continue to face mental health issues after a life-threatening or life-changing diagnosis. And she hopes to convey that people don’t have to feel alone.
“You always walk on eggshells when the next diagnosis comes along, like, oh my god, do I have to ride that roller coaster again … You still have that knot in your stomach waiting for your test results,” she says. “And you wondering what’s going to happen. I still do this every eight weeks for myeloma.”
To deal with this uncertainty, she encourages people to have an ongoing relationship with their family doctor, who knows the family history and the potential risk factors that may warrant specific diagnostic tests. This is important for prevention and for someone with a specific diagnosis.
Maintaining a relationship with a doctor can also help remind people to schedule annual mammograms or colonoscopies, for example. Mammograms have prevented cancer mortality by 40%, and patients may need different types of screening depending on their age, race/ethnicity, and risk.
Learn how to navigate and build trust in your organization with The Trust Factor, a weekly newsletter exploring what leaders need to succeed. Login here.
