A cancer ‘road map’ for patients, caregivers, and survivors

Cancer is such a vast and varied subject that there are tens of thousands of books on every imaginable aspect (search Amazon books for “cancer” if you doubt it).

But Kim Thiboldeaux saw a need for a comprehensive, compassionate, authoritative cancer guidebook, almost like a travel guide. It would cover everything from diagnosis to treatment to survivorship to end-of-life issues. It would have lists, worksheets, and recommended resources, and readers could skip around, reading a chapter here or there as needed.

That was the genesis of Your Cancer Road Map: Navigating Life with Resilience.

For Thiboldeaux, a self-described “Philly girl” who grew up in Olney, the 287-page book was the culmination of her two decades leading the Cancer Support Community, a global nonprofit network that annually delivers $50 million in free support services to cancer patients and their families. CSC has 175 centers, including two in Philadelphia and, largely thanks to Thiboldeaux, one on a Navaho reservation.

Along the way, Thiboldeaux became so deeply knowledgeable about cancer — a “thought leader” — that she was sought after as an adviser. She has been part of initiatives led by Stand Up to Cancer, the National Institutes of Health, and the Joe Biden family, to name a few.

First lady Jill Biden wrote a foreword for Your Cancer Roadmap, noting that she and Thiboldeaux are both from Philadelphia, both one of five kids, and both avid Eagles fans, as well as cancer activists.

“A cancer diagnosis is a door to a complicated and foreign world. Patients and their families must navigate complex insurance and payment systems, learn obscure medical terms, advocate for their health, and have difficult conversations with people they love,” Biden wrote. “And they must do it all without a road map or guide to show them the way. Until now.”

Thiboldeaux, who has never had cancer, had the advantage of drawing from the CSC online educational series “Frankly Speaking About Cancer.”

A bit of that repurposed material may strike savvy readers as pablum. “Ten Tips for Living Well with Cancer,” for example, includes ”Be your own best advocate,” and “Maintain hope.”

Overall, though, Thiboldeaux does a masterful job of explaining complicated, intimidating topics in simple terms, then listing resources for those who want to go deeper. Among the topics: health insurance and financial toxicity, clinical trials, the difference between genetic and genomic testing, and advance directives.

“I wanted it to be on sixth- to eighth-grade reading level,” said Thibodeaux, who is now CSC’s executive chair, serving the board of directors. “I also kept the chapters to only about eight pages. They’re short and you don’t have to read them in order.”

Six of the 29 chapters are devoted to recognizing and managing the emotional and psychological turmoil of cancer, including depression, loneliness, and fear of recurrence. There are also short, personal essays from cancer survivors, among them TV host Joan Lunden and ESPN reporter Holly Rowe.

Thiboldeaux’s encyclopedic approach does not shy away from hard-to-discuss subjects. The chapter on end-of-life issues includes a list of questions to ask your insurance company about home health care and hospice. The chapter on sex and intimacy declares that sexuality remains neglected in oncology care, so “you will probably have to be assertive to find good (sexual health) care.”

Your Cancer Road Map ends with an essay by neurosurgeon Joseph Stern, author of the book Grief Connects Us. He says he used to “keep my distance from patients,” until the loss of his sister and her husband to cancer “reshaped my appreciation of the liberating powers of grief and compassion.”

“With the coronavirus pandemic, grief and loss have affected all of us,” Stern wrote. “While transformative, the process of grieving is painful and disruptive; I wouldn’t wish it on anyone. Once through it, there’s no going back.”