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

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.”