Vicki A. Jackson, MD, MPH, and David P. Ryan, MD — prominent chiefs at Massachusetts General Hospital — frequently get evening calls at home from friends of friends and family recently diagnosed with cancer. The frank, practical advice they give is now available in their recently published book, “Living with Cancer: A Step-by-Step Guide for Coping Medically and Emotionally with a Serious Diagnosis.”
Drs. Jackson and Ryan often collaborate in caring for patients with cancer. Dr. Ryan is chief of Hematology-Oncology and clinical director of the Mass General Cancer Center. Dr. Jackson is a palliative care physician and chief of Mass General’s 20-year-old Palliative Care Division.
Palliative care focuses on relieving physical and emotional suffering from the symptoms of cancer and its treatment. Such care is designed to be provided at all stages of the disease, and not just near the end of life.
Living Well with Cancer
“People used to think that it would make them depressed to talk about hard things like chances of recovery or how to prepare if they get sicker, but that doesn’t happen,” Dr. Jackson says. “We help patients figure out what living well means to them in the context of cancer. That’s what this book is meant to do.”
“We wrote this book so others can learn how to advocate for the kind of care they’d get if they were at Mass General.”
In the book, Dr. Jackson gives the example of a woman in her late 40s with two young children and metastatic lung cancer. Living well to her meant staying active. “Our goal for her was that she feel well enough to play hockey several nights a week,” Dr. Jackson recalls.
Mass General has been at the forefront of integrating palliative care into the cancer-care process early. The hospital pioneered outpatient palliative care, and also provides in-hospital palliative care and at home. Mass General research has shown that certain cancer patients who start seeing palliative care providers early in their cancer treatment have an improved quality of life and sometimes live longer. They are 50 percent less likely to experience depression.
Based largely on research done at Mass General under the leadership of Jennifer Temel, MD, on the value of palliative care, the American Society of Clinical Oncology (ASCO) recently changed its clinical care guidelines. ASCO now recommends that patients see a palliative care provider along with their oncologist within the first couple of months after diagnosis.
The Benefit of Both Specialties
“We’ve come to appreciate that a collaboration between medical oncology and palliative care is powerful and often necessary for patients to get the best chance at their best-case scenario,” Dr. Ryan explains. “We wrote this book so others can learn how to advocate for the kind of care they’d get if they were at Mass General.”
Dr. Ryan tells a story in the book that underscores for him how patients benefit from both medical oncology — with its emphasis on tests, scans and treatments — and palliative care. He and Dr. Jackson were both caring for a patient with metastatic gastric cancer who needed to be switched to another form of chemotherapy. The patient hadn’t complained much to Dr. Ryan about his neuropathy, damage to nerves outside of the brain. Perhaps he thought Dr. Ryan would hold back on treatment if he did.
But the painful tingling and numbness of neuropathy was his biggest complaint to Dr. Jackson. Dr. Jackson expressed her concern to Dr. Ryan that one of the second-line chemotherapy drugs he was considering would make the neuropathy much worse. She suggested an alternative drug that wouldn’t worsen the neuropathy, and he agreed.
“That’s when I realized that this patient had a better chance because there was a palliative care physician involved in his care,” Dr. Ryan says.
A GPS for Navigating Cancer
The book is divided into three sections: Making Sense of Your Diagnosis, Managing Symptoms and Side Effects, and Dealing with Progressing Cancer. It’s the cancer equivalent of the iconic book for pregnant couples called “What to Expect When You’re Expecting,” Dr. Ryan points out.
“We want to empower people to ask the right questions, to ask their doctors if their cancer is curable, or how to slow it down or to feel well as long as possible.”
He says the cancer experience has changed in recent years thanks to exciting new treatments like targeted therapies and immunotherapies. Patients are living longer as a result. But it can be confusing to understand prognosis and the goal of experimental treatments.
“We want to empower people to ask the right questions, to ask their doctors if their cancer is curable, or how to slow it down or to feel well as long as possible,” Dr. Ryan says. “Many people have a hard time asking these questions or are intimidated by the language that physicians use. They nod their heads, but don’t really understand.”
Living with cancer is one of the most disorienting times in people’s lives. But as a reviewer pointed out, this book is like a GPS for navigating it well.
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