‘Fatal to Fearless’: Facing a Deadly Cancer Diagnosis and Fighting Back

(AARP) – Kathy Giusti was 37 years old when a sudden cancer diagnosis — a blood cancer called multiple myeloma — rocked her world. Giusti, a pharmaceutical sales exec and new mom, refused to accept the devastating three-year prognosis and embarked on a journey that saved her life — and along the way became a resource for others fighting their own cancer battle.

Giusti’s book, Fatal to Fearless: 12 Steps To Beating Cancer in a Broken Medical System, is culled from the 30 journals she kept during her battles with multiple myeloma and later breast cancer. It details her very personal “crash course” in fighting cancer while disrupting the medical system and co-founding the groundbreaking Multiple Myeloma Research Foundation. Named one of Time magazine’s Most Influential People and Fortune’s World’s 50 Greatest Leaders, Giusti shares advice from top “medical insiders” and outlines the path she took from diagnosis to treatment to survivorship while providing a primer for patients and caregivers on how to ask the right questions and be their own best health advocate.

What propelled you to write this book?

“Having been through [cancer diagnoses] in a broken system, but working my way through it, I knew what worked and I felt like I wanted to make sure I shared with everybody,” Giusti says. “Yes, you have cancer. Yes, you’re scared. I 100 percent understand your fear. But if you get the right knowledge, and if you take the right steps, you can buy yourself time, and that time, in today’s world, can potentially buy yourself a cure.”

You say our medical system is broken. Why?

“The science, especially now, is moving at breakneck speed and the system looks exactly the same,” Giusti says. She explains that the onus is on the patient to integrate the fragmented care, cobbling together a host of oncologists, specialists, physical therapists — all while getting the right diagnostic testing and keeping an eye on clinical trials. “On average, you have 16 minutes with your oncologist,” she says. “That means you’re making the decision often with your oncologist, nurse or with your caregiver and you're trying to have mutual decision-making processes.” Plus, there is the need to understand insurance coverage and associated medical costs. “So much stress on the patient and then the caregiver supporting the patient.”

And researching the diagnosis is crucial

“You need to find the credible sites. And instead of making you guess … I can tell you,” she says. “When you first start, it’s fine to go to Cancer.gov, Cancer.net or Cancer.org. Any of those three are highly reliable resources…. They’re funding all the research grants in that disease. And so, the moment we can get you to the right person and you realize they’re out there, the better off you'll be.”

What next steps should you take?

Write down your needs and your wants, she says.

“So, when you’re writing down your needs, it’s like, what is scaring you the most: ‘I can’t do my job. I can’t take care of my kids. I can’t take care of the family. Who’s walking the dog?’” For example, if work is a priority, she says, knowing that will help determine your choice and location of treatment facility. If ensuring your child can make it to sports practices is key, find a parent who has a kid on the same team who won’t mind bringing your child home after the game. “If you can start preparing and organizing yourself a bit, then by the time it’s treatment ‘go’ time, you’ll know who that team is."

You refer to the three T’s: the right teams (medical and personal), tests and treatment plan

First, if you don’t feel a connection to your main doc, look elsewhere. Giusti did. Also, be mindful that most insurance companies will pay for you to get a second opinion. “If you can get a second opinion from an academic center in oncology, it really does help,” she says. “That academic clinician will often stay with you and provide input into your care plan with your local oncologist.”

And, according to Giusti, you need to push for additional testing. “PET scans are an important process that you want to get. It helped me decide when I was going to start treatment. But you have to ask your insurance company for these things. They are not a given. And the same thing with biomarker testing, genomic testing — anything that becomes super precise. You have to ask for it.”

And then comes treatment

“Once the testing is done, you’ll know more about your treatment plan. Is it going to be chemotherapy? Is it surgery? Are you moving towards a targeted therapy or an immunotherapy over time?” Giusti advises going to the National Comprehensive Cancer Network (NCCN) for additional information. “The NCCN provides consensus around patient treatment programs and insurance companies often follow their guidance. Looking at NCCN gives patients an understanding of the standard of care for their cancer (and what is likely covered).”

Building a caregiving support team is critical

Giusti says that everyone tends to rely on the person who is physically closest to them, which in her case was her husband. But to avoid caregiver burnout, be clear about your asks. “If you know that they can always be available on a Tuesday you’re going to try to do your best to set your appointments up on a Tuesday,” she says. “There are simple things you can do that make it so much easier for the caregiver but also make it easier on you.”

After her time as a patient, Giusti became a caregiver for her twin sister and her mother at the same time. The challenge gave her additional insight into what caregivers face: “The more you're defining the roles and responsibilities for that [caregiving] team, the better off.” Especially when most caregivers are still working part- or full time. “The most important thing for the patient is to say, ‘Well, I'm putting a lot of stress on my caregiver. This is a lot of time and energy I'm taking from them.’ You've got to be able to plan better with them and or find other resources to help you from a foundation or from the hospital. Wherever you can find them help, because it will take too much of a toll.” Talk and set boundaries.

The last section of your book deals with survivorship. Why is that so important?

“I do feel like patients have every right to celebrate getting through the toughest part. Which is the surgery, the stem cell transplant, whatever it’s going to be,” she says. “But I think it’s also really important to know that is also your highest likelihood of going into depression…. Your body is still recovering from all the treatment. And then in the back of your mind is this concern: Is [the cancer] really gone? It’s important to understand your remission — complete remission can look different than a stable disease. And so, understand what it is, understand your risk of relapse and make sure you’re being monitored appropriately. If it’s going to relapse, you want to find it again, as fast as you can.”

You talk about losing your “North Star” — priority wants and needs — during the cancer process

“When I lost my North Star, it was, ‘Why did you work so hard to build your family and then work 70 hours a week and not be able to be in the moment with them?’ It was that balance of trying to save my life, while live it….

“I would probably say the reason I wrote the book was to save you some time and energy, so you have a little more time to live your life, the [way] I wish I had in that time.”

Nancy Kerr is a senior writer and editor of features content for AARP. Previously, she was the editor of special projects for USA Today; a senior editor for the USA Weekend magazine; an assistant managing editor of digital content at The Washington Post and the director of women’s programming at America Online.