Empowering People to Navigate Their ‘Cancer Road Map’

Advocacy Groups | <b>Cancer Support Community</b>

It is important to help people feel more confident as they face many decisions during their cancer journey and provide them with resources to show them that they don’t have to face the disease alone.

Kim Thiboldeaux refers to herself as a world traveler. She has visited all seven continents, been to more than 50 countries and has seen all 50 states. During those travels, Thiboldeaux, who is the executive chair of the nonprofit organization Cancer Support Community, has interacted with thousands of people living with cancer.

After noticing a theme in her discussions with patients, their friends and families, Thiboldeaux decided to write “Your Cancer Road Map.” In the book, Thiboldeaux provides a guide full of resources for anyone who may be affected by cancer — including patients, caregivers and family members.

“Whenever I (travel), I always have a good guidebook in hand,” she said in an interview with CURE®. “I hope this will be a guidebook or roadmap for patients.”

Here, Thiboldeaux talks about some of the topics that aren’t always discussed during the cancer journey, as well as why the book includes essays from patients including celebrities, and more.

CURE®: Why was it so important to put this book together?

Thiboldeaux: Over the past 20 years, I have spoken to thousands of (patients with) cancer and their family members and loved ones, and I found in these conversations certain themes emerge. I found that I was sharing the same information, same advice and tips. And it just seemed to make sense to put it all in one place in an easy to use format, so that anyone facing a cancer diagnosis has this book, “Your Cancer Road Map.”

Also, there have been so many advances, especially in the past decade, when it comes to cancer diagnosis, treatment and care. I wanted to make sure that folks had the most up-to-date information on facing a diagnosis.

What are some of the main takeaways from the book?

I remember some years ago, speaking to a woman in Virginia who had just been diagnosed with cancer, and I remember she said to me, “I don't know what my outcome is gonna be, but come what may, I want to feel confident in my decisions.” That conversation always stuck with me. My hope is that the book will help people feel more confident as they face a myriad of decisions, when diagnosed with cancer, whether it's around getting the right genetic and genomic testing, understanding insurance, understanding finances, talking to your kids about cancer, I want this book to help folks know that they really don't have to face cancer alone.

Why put together a book that is not just for one specific group, but rather everyone who may be involved in someone’s cancer journey?

People find the Cancer Support Community at different points in their cancer journey. I wanted folks to be able to kind of jump into this book at any time. No matter where they are in the journey, they could pick it up, flip to the table of contents and go straight to any chapter or topic that's really relevant to them. But we wanted to follow that full continuum from diagnosis, through either post treatment, survivorship or end of life. We also know that cancer doesn't just affect the individual or the patient, it affects family, friends, coworkers, neighbors … everyone around you; this book is as much for those people surrounding the patient as it is for the patient.

The book touches upon topics such as finance, sexual health and hospice care among others. What topics do you hope people pay more attention to than they normally would?

There are a number of areas where I see patients often have misconceptions. One of those areas, for example, is clinical trials. I think sometimes patients think that they'll get a placebo in a cancer treatment trial, which is almost never the case. So, I want folks to think about trials in a different way and really dig in and understand what they are. People also think you only go on a trial as a last-ditch effort, which is not the case.

Another critical area these days is genomic or biomarker testing. It is critical now that folks get the right biomarker testing because getting the right testing will inform the right treatment at the right time. We still find that patients don't quite understand it, (and) there's a lot of good information about that.

The last thing that I would ask people to think about is their emotional wellbeing. We know that cancer brings distress, anxiety (and) depression. Those things are very normal in a cancer diagnosis. But I think sometimes people neglect them, (and) I want them to know that those are normal feelings to experience. And there are lots of ways to address that. Maybe they want to participate in a support group, maybe they just want to go to a one-on-one with a private therapist, maybe they want to reach into their faith community for the emotional support that they find they may need. But I want them to know that that's normal.

The book includes personal stories from the average person, as well as celebrities such as Joan Lunden and ESPN’s Holly Rowe. Why was it important to include these essays, and what are you hoping people take away from these stories?

I always say that cancer is the great equalizer. It doesn't care if you're an athlete, or a celebrity or a journalist or a businessperson. Cancer shows no regard for age, for race, for gender, geography or socioeconomic status. (The) personal stories and experiences in the book, in some ways, make cancer a little less scary. It gives people the inspiration to face a cancer diagnosis empowered. And if you think about some of these folks who did face cancer in the spotlight, I'm hoping it brings (people) inspiration. And, in their stories and essays, they share some tools and practical tips when facing a cancer diagnosis.

What are you hoping people walk away with after reading the book?

I really hope that people walk away feeling empowered and confident. I also want folks to understand that there's no bad question, no wrong question, no stupid question. This is your life, (and) everything's on the table.

I hope they read through these chapters and get into some of the detail on some of these topics and go, “Oh, yeah, that was a question I had, but I never really wanted to ask anybody about it.” I hope that it does that for folks, and that it inspires them to be their own best advocate in their health care. And I also hope they see the resources outlined in the book and realize that there are a ton of resources available to help them. There's a whole community that's out there standing with you, standing there to support you, and I tried to include as many of those as I could in this book.

This interview has been edited for clarity and conciseness.

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