Beyond providing cancer patients with the best medical care today's world allows, oncologist Dr. Mark Fesen wants more.
Along with the clinical challenge they face, he knows firsthand that cancer patients need an advocate -someone willing to lead them through the maze of an unknown system, and also willing to provide a shared comfort zone.
"Bonding with patients to change the system, that's what I'm trying to do," he said.
Fesen has presented his call to arms in "Surviving the Cancer System," a 274-page book with the subtitle "An Empowering Guide to Taking Control of Your Care."
The book circumnavigates a host of family, friends, patients, colleagues and journalists. And it embraces Fesen's concern for patient advocacy.
On the eve of its release, and at the end of a day of seeing patients, Fesen sat at his desk in the Hutchinson Clinic to talk about his book.
His gentle smile is laced with thin lines of weariness that surround his soft brown eyes. He speaks in a convincing manner and with a deep-seeded persuasiveness.
"It's been in the back of my mind for years," he said, as he balanced an advance copy of "Surviving the Cancer System" in his hands.
"Surviving the Cancer System" is sourced from thousands of patients he's treated over 15 years as a practicing oncologist -- diagnosis through treatment. He's seen it all: panic, worry, misconceptions based on what patients have heard from other patients, confusion, realistic and unrealistic hopes, and the financial trauma brought on by the cost of treating cancer.
His 16 chapters with titles and subtitles begin with the survival of a system, a battle that goes beyond the disease. Other chapters take on understanding cancer, major cancer centers, forms of treatments, and, critical to Fesen, "Insurance Angles," "The Pharmaceutical Industry" and "Making Your Own Luck."
Throughout the book he intersperses the chapters with true-life anecdotes, patients he identifies by first names and the firsthand facts of situations they've faced.
Critical to his message: the doctor-patient learning curve.
Doctors speak in statistics, numbers of survivors and years of survival; it's not easy for patients to comprehend what those statistics mean.
His hope in writing the book lies in seeking a better relationship for the patient and the oncologist, a bonding that allows comfort for the patient in voicing concerns and complaints; for the oncologist, honesty, concerns and a complete opinion as to what the treatment should be.
While patients feel intimidated by the doctor, at the same time the doctor feels intimidated by the patient.
Also critical to Fesen: surviving a financial system that covers some drugs and fails to cover others that might be the most beneficial to treatment; pharmacy costs vs. assistance plans; and for the over-65 crowd, the maze of Medicare/Medicaid.
In a discussion of his concern about the extremely high cost of cancer drugs, but not in the book, Fesen compared the cost of treating cancer to the early days of treating AIDS, at a price that made the drugs unattainable.
AIDS patients came out with a united, assertive and bold front. They threw blood on themselves and marched, a move that forced drug companies into making AIDS medications cost attainable.
For cancer patients, it's been pink bows on donuts.
"That doesn't scare the old drug companies," Fesen said. "It's a failure of the advocacy movement, fragmented and not as effective. You're not serving patients well when you have a large number of them pass away -- die."
Feedback from cancer patients and the medical community who have had access to advance copies of the book has been positive. Among early readers is breast cancer patient Deanna Favre, the wife of pro football quarterback Brett Favre. Advance praise in the forward of the book comes from spokesmen and women from the National Cancer Institute, Victory in the Valley and others.
Writing the book wasn't easy, Fesen said. He devoted 18 months to the project. With the first book published, he's already thinking about the next one: ways of preventing cancer and early detection.
The process meant that he had to learn how to write a book, how to deal with an agent, a series of editors and a publisher. He felt the challenge of writing about the complexity of the system without stepping on too many toes.
His goal provided the incentive. For the oncologist, there's the complication of knowing what kind of a bonding relationship the patient needs to give the best opportunity for survival.
"To me, if you're going to do this job you have to be the patient's advocate," Fesen said. To see more of The Hutchinson News or to subscribe to the newspaper, go to http://www.hutchnews.com. Copyright (c) 2009, The Hutchinson News, Kan. Distributed by McClatchy-Tribune Information Services. For reprints, email tmsreprints@permissionsgroup.com, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.
Copyright (C) 2009, The Hutchinson News, Kan.