Navigating a rare cancer diagnosis: Insights from new book, “Fatal to Fearless”

Photo: Kathy Giusti and family

Facing a cancer diagnosis and its aftermath brings a unique set of challenges that benefit from information, support, and a proactive approach. Kathy Giusti, two-time cancer survivor and founder of the Multiple Myeloma Research Foundation (MMRF), has authored a new book called Fatal to Fearless which is filled with practical advice for patients and caregivers navigating this winding road.

We recently sat down with Kathy, who shared some of her wisdom for fellow patients. Here are a few takeaways from that conversation:

• Knowledge is powerful. It’s normal to feel overwhelmed when newly diagnosed, but you can empower yourself by learning everything you can. “The more you know about your specific cancer and how it should be treated, the better off you’re going to be,” Kathy says. When sifting through internet search results, she suggests focusing on information from disease-specific organizations like MMRF and the Chordoma Foundation, who “know the disease better than anyone.”

• Get more than one opinion before choosing a treatment path. Kathy underscores the importance of consulting with multiple doctors who have substantial experience treating your specific cancer, which can help you make the most informed decision about your care.

• Find strength and support from family and friends. "The most important thing you can do is build a team around you," Kathy says, highlighting the necessity of emotional and logistical support. If possible, she recommends appointing one person to help coordinate and schedule different types of support offered by your family and friends.

• Seek peers in your rare-disease community. Kathy emphasizes the importance of connecting with others who are going through similar experiences, especially when dealing with a rare cancer like multiple myeloma or chordoma. “It can be hard to find other people that are going through what you're going through,” she says, but disease-specific foundations “can connect you with another person who's going through something similar, and take the isolation out of it.” Our Peer Connect program, virtual support groups, and online community aim to do just that.

• Make a plan for your survivorship phase. Kathy's candid discussion about life after treatment, when she unexpectedly felt depressed, opens up an often-overlooked conversation about survivorship. This leg of your journey requires unique strategies and resources, and is one that we’re committed to supporting through our suite of survivorship resources.

• Take action to improve the outlook for yourself and others. By donating, fundraising, and other ways of contributing to scientific progress, patients and their loved ones can have a powerful impact on advancing research and treatment options, Kathy notes. “Every patient has their eyes on the future...if we all work together, we can turn our hopes into reality," she says.

Kathy’s book is a roadmap for facing the challenges posed by cancer, and a testament to the power of learning, support, and action — a framework that many people in the chordoma community also embrace and exemplify. You can watch our full interview here.