Kathy Giusti is such an inspiration. She’s beaten cancer — twice — and started the Multiple Myeloma Research Foundation, which has raised more than $500 million for research and helped develop over a dozen FDA-approved therapies.

But that’s not all. Giusti has written a new book drawing on her own experience with multiple myeloma and breast cancer, as well as her deep knowledge of what she calls “our broken medical system.” It’s a detailed step-by-step guide to help patients and caregivers make their way through the complex web of cancer centers, clinical trials, and insurance issues they’ll face in treatment — as well as advice on how to survive the emotional wringer the disease puts you through. 

“Treatment can be a lonely journey, there’s so much that’s in your head and your heart as you move through this,” Kathy told me recently. “I think of the book as a companion to help guide and support without judgment.”

Fatal to Fearless, out Feb. 20, is a must-read for anyone with cancer and anyone supporting a patient. I got to speak with Kathy about her crucial new book, her 12 steps for making it from diagnosis through to remission, and much more. Watch the video for our full interview and read some of the highlights below.

Katie Couric: Kathy, this book is so badly needed. Can you talk about what motivated you to write it?

Kathy Giusti: Over the years, people like you and myself have probably talked to thousands of cancer patients. They call us because they know we’ve been through it. Over the years, what I’ve realized is that just spending a little time with people on the phone moved them from a state of fear or paralysis — this feeling of Oh my God, I’ve just been diagnosed, what do I do? — to a point of action. Of course, these one-on-one phone calls aren’t a sustainable model to educate everyone out there who needs support, so I knew I had to write the book and take what I had learned from all our journeys together to help all future cancer patients.

Why is it so difficult for cancer patients to navigate the medical system?

I went through the system years ago with multiple myeloma and again more recently with breast cancer — and it’s still really broken. It’s too vast and fragmented. When most people are first diagnosed, for example, their doctors will tell them, “You need to get to a medical oncologist, surgical oncologist, pathologist” — on top of their infusion and imaging appointments. You get hit with all that and your head just starts spinning. But it’s up to the patient to integrate that whole team. 

The second thing is that the science is moving so fast. New treatments are emerging and they’re very complex, but on average a patient only gets 16 minutes with their oncologist. How are you possibly going to understand all the options available to you in 16 minutes? So you’ve got to do your own research and educate yourself. And then the third issue is money. If you don’t play the insurance game the right way, the out-of-pocket expenses can be unbearable. One in three cancer patients have to reach into their savings, call a friend or relative for financial help, and some go bankrupt.

What would you recommend if somebody’s overwhelmed and just needs a real human being to talk them through this complicated system?

Finding a navigator is one of the best short-term solutions, and they’re available to patients. The Multiple Myeloma Research Foundation, for example, has full-time nurse navigators, who you can call toll-free at any time. Other organizations have navigators that get assigned to the patient and who stay with them for the long haul. The hospitals are starting to bring in navigators too, and Medicare is starting to reimburse for navigation. So that’s a really good step in the right direction.

I love the way you integrated your personal story into the book. Can you take us back to your initial diagnosis, what did you learn from the process of going through treatment?

That was back in 1996. At the time, I was running worldwide operations for a pharmaceutical company when I was diagnosed unexpectedly at 37. This was before the internet, so I remember going to a Borders bookstore and thumbing through textbooks on the floor with my husband trying to figure out what I could about this disease. Now, I have a science background, and even I’m thinking this jargon’s a nightmare. But you have to move from processing that you have this fatal disease to meeting all of these doctors, and that’s what I go through in the book. It describes what you need to do at the moment of diagnosis, during this really overwhelming time, then I move you through the treatment, and when you reach stable disease or remission.

How have things changed since then?

What’s changed the most is the pace of scientific advancement. Back in 1996, there were very few scientific abstracts out about multiple myeloma, and it wasn’t hard for me to stay on top of the disease because so little was happening. In today’s world, new techniques and treatments are being developed all the time, and there’s so much information at your fingertips.

There’s a lot of misinformation out there, too. What kinds of sources do you think patients should avoid?

When you first start your research, you want to go to a site that’s a .org and to disease foundations. Once you know your treatments you can then start looking at pharmaceutical sites. The thing to stay away from is the sites that don’t have updated information and that look like they’re trying to sell you something. The other thing is that when you search online, every cancer center is going to pop up. But just because a certain center is the first result doesn’t mean it’s the best facility for your specific cancer.

What are the broad strokes of the 12 steps? And how did you think about organizing this process? 

At diagnosis, what I tell everybody is, number one: Google wisely. Say that you’re newly diagnosed with multiple myeloma. Don’t just search for that term, be specific. The second thing I’d say is to get a second opinion. I’m always shocked at how many people don’t get one. Third is to make sure your insurance is covering all of this. And when I say that, I mean call the insurance company, don’t make any assumptions about that coverage. Those are the three most important steps at diagnosis. 

Now when you get into treatment, there are the three Ts to consider. The first part is the team. You can go to a community hospital, an academic center, or an NCI-designated center — whatever’s the most convenient and appropriate for you. The second T is tests. You’ll get routine blood and metabolic tests, but you have to ask for imaging too. There’s also biomarker and genomic testing, which insurance companies are not routinely covering. So when you move from your team to your tests and then on to the third T, your treatment, you need to understand what your standard of care is. There’s a website, nccn.org, which will give you the standard of care that insurance typically covers. 

I think there are so many misconceptions about clinical trials and the way drugs are developed and brought to market. Can you discuss the pros and cons of participating?

What I always say to patients is to study the trial. If it’s a phase-one, it’s very early and they’re still figuring out the dosages. So unless you’re a struggling patient with a relapsed disease, you may not want to join. At phase two, they know the dose but they’re still trying to figure out the efficacy. By phase three, the drug has moved pretty far along and it’s likely a very good study to get into. Typically, at worst, you’re going to get the standard of care if you join a trial. At best, you can get the new treatment. A lot of times, the studies are crossover, so when it’s done they’re going to move everybody over to the better treatment, so it’s not negative to be part of that pool. You’re also going to be evaluated very closely and get tons of testing done, so you actually start to learn a lot about your disease. Only 9 percent of patients enter clinical trials, and yet they really do help us understand which drugs are best. The reason why there aren’t more patients doing this is because doctors don’t have the time to share all the clinical trials with them. And these are not bad doctors, it’s just a bad system that puts the burden on the patient.

Who do you hope will buy this book, Kathy?

Firstly, the patient. Treatment can be a lonely journey, there’s so much that’s in your head and your heart as you move through this. I think of the book as a companion that can help guide and also support without judgment. I’m supposed to be super educated on this and when I was being treated for breast cancer I still got hit with big bills because I went out of network and I still ran into infections that I probably could have avoided if I’d been more on my game. There’s no judgment here, it’s a hard system. 

It’s also absolutely for the caregivers. When I say that, I think back to my own children, who were so young when I was going through it the first time around and adults the second time. They were caregivers and they gave up a lot. The book is also meant for healthcare professionals. I want them to know that the system is broken. I know they work hard, and they’re doing everything they can. It’s not them — it’s the system. I hope they read this and refer people to the book and understand that the book’s supposed to be their friend too. 

This interview has been edited and condensed for clarity.