Learning how to fight rather than fear cancer: A battle-hardened expert offers advice

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TV personality Katie Couric calls Kathy Giusti "a badass ... cancer-fighting whiz." But in 1996, Giusti, then a 37-year-old pharmaceutical executive, was a terrified young mother who had just been given three years to live.

Instead of accepting that fate, Giusti decided to change it.

She learned everything she could about her disease and the system that delivered her care. Then she set out to transform both.

A stem cell transplant from her identical twin sister helped buy Giusti long-term remission.

Fundraising and smart scientific bets led the Multiple Myeloma Research Foundation she helped found shepherd 15 drugs from discovery through clinical trials and to patients. Five-year survival rates for multiple myeloma has now climbed to over 65% from 20%, when she was diagnosed. Many, like her, live far longer.

Then, in 2022 Giusti, was diagnosed with breast cancer. Even though she had helped several U.S. presidents in their fight against cancer, she said she made mistakes with her own care.

This month Giusti, now 65, published a book, "Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System," that details her journey and gives advice to help others with theirs.

USA TODAY spoke with Giusti about her experiences, flaws she sees in the medical system and what she's optimistic about in health care. This interview has been edited and condensed.

Question: You say in the book that being diagnosed with cancer today is not like it was even a few years ago. What do you mean by that?

Answer: The science is moving unbelievably fast, but the system looks exactly the same.

If you can buy yourself a year, you might be able to buy yourself another year, another two years. To not be aware of what's happening in your specific cancer means you probably will (miss out) because good things are happening pretty much across the board. To not be aware of it would be a huge waste.

What can people do to educate themselves about cancer, especially if they aren't comfortable with scientific language?

The No. 1 thing is to pull the language (of your diagnosis) directly from your portal so you know exactly what you have. Use the exact words so you don't go down rabbit holes.

Cancer.net, cancer.org, cancer.gov ‒ all three are really good. Go to one of those sites and look up your cancer. Then go and put in "patient advocacy group" or "research foundation" and the name of your cancer. Patient groups are really underutilized. They have navigators (who) will walk you through everything.

A lot of people feel helpless when they're diagnosed. What do you suggest?

Don't go it alone. It doesn't take an army, it just takes one or two (friends or family members). Know what you need and get the right people to help you.

You talk about turning down the fear, fearing less. Why is this important?

Cancer still brings an incredible amount of fear. There are certain cancers ‒ liver, pancreatic, stomach ‒ that are hard. (The fear) creates paralysis. They gasp and they stop and they don't know what to do. Why did this happen and what did I do wrong? Take all this 'why' energy to 'how' ‒ that's where all this energy has to go: forward-moving, forward-thinking.

Your book includes about 250 pages of advice for patients and their families. Can you pick a few key pieces?

Take a deep breath. Do your research very wisely. There are resources out there for you, but you've got to call them and talk to them and see what they offer and don't be scared to do that. It's time very well spent.

When you get to the treatment side, know the tests that will help define your type of cancer and push for them. The more specificity you have to your specific type of cancer, the better off you're going to be. Insurance does not routinely cover this. You have to fight to get what you need from your insurance company.

Go celebrate (after treatment). Realize your body's been through a lot. You should take some time to heal but over time, know where your remission is. In today's world of monitoring and tracking, they're going to be able to find things faster and sooner. You want to be monitored by a great oncologist who's paying attention to that.

We need to be asking questions: (about the) risk of relapse, and, on the other side of the equation, can I ever get off these damn drugs?

What do you suggest on the prevention side?

They say 40% of cancers are preventable. Lifestyle. Diet. For cervical cancer, we have vaccines.

Make sure you're always doing your physicals. Did you tell (your doctor about) every risk? You've got to know your (family) history.

If you had a magic wand, what would you fix about our health care system?

I would bring in better navigation for patients. I would bring in better integration with the systems and the way the hospitals and the medical systems are set up. And I would change the whole thing so it focused on incentives that drove quality for the patients.

What are you optimistic about in terms of health care or cancer care in particular?

I am so unbelievably optimistic about the science. (Such as) artificial intelligence, if used wisely in support of the doctors and the clinics and the researchers.

I hope the system will motivate young people to stay in health care, to stay in science. We have to get to the point where it's a very well-respected field and that people are being compensated fairly for their incredible work ‒ or we're not going to have enough nurses, doctors and Ph.Ds. People think the patients are struggling, but the caregivers are struggling just as much.

This article originally appeared on USA TODAY: In 'Fatal to Fearless,' Kathy Giusti chronicles multiple myeloma fight