There are few words more loaded with pain and powerlessness than “cancer.’’ It’s no wonder studies have found patients often comprehend only a fraction of what their doctors say right after they utter the sentence “You have cancer.” It’s as if a protective wall immediately goes up, with disbelief and cognitive dissonance taking the place of poured concrete.
Dr. David Ryan has delivered this scary news more times than he can recall. As the chief of hematology/oncology at Massachusetts General Hospital, he is a leading light in the cancer field who also has an uncommonly good bedside manner. About a decade ago, he and colleagues embraced a groundbreaking approach pioneered at MGH. He began collaborating with Dr. Vicki Jackson, MGH’s chief of palliative care, the field that focuses on patients’ symptom management and emotional health during treatment. Ryan and Jackson fully integrated oncology and palliative care at the front end of cancer treatment, rather than just with patients at the end of life, which was typical at the time. Their experiences supported earlier research done by a colleague, Dr. Jennifer Temel, that found that patients who received this kind of integrated care reported lower levels of depression and lived longer.
In their new book, Living With Cancer (coauthored with medical writer Michelle Seaton), Ryan and Jackson offer patients and their families useful step-by-step advice. It comes at a time of unusual excitement in the field, thanks to new treatments that hold the promise of making long, full lives with cancer far more common.
Why did you write this book?
Ryan: We want people to be able to become advocates for themselves without it being necessary for their brother’s college roommate to be an oncologist or palliative care doc at MGH.
Jackson: I hope this book is like a decoder ring for people, because it is surreal to have a cancer diagnosis. It doesn’t matter how capable you are in your professional world, you have no clue about the terms you’re going to hear or what it’s going to feel like. We want to give people information about what to worry about and what not to worry about.
When most people hear the word “palliative,” they think of . . .
Jackson: Hospice! It’s a real patient education issue. When I walk into a patient’s room, I say to them: “My job is to help you live as well as you can for as long as you can. If this ends up being a life-threatening illness, I’ll be there for you for that. But right now, I’m just trying to help you get through treatment and become a competent, capable cancer patient.” Most people don’t understand that hospice is a medical insurance benefit for people with a prognosis for six months of life or less. Palliative care is appropriate for any patient with any serious medical diagnosis.
Dave, you describe in the book your eureka moment for grasping the power of this integrated approach when you realized Vicky knew more about one of your patient’s symptoms than you did.
Ryan: Patients don’t always tell oncologists everything. They’re trying to put on their best face for me because they want passing grades. I’m really concerned about whether they are doing OK enough so I can give them chemotherapy. Maybe I’m not spending as much time on side effects affecting their quality of life — like can they tie their shoes? — whereas somebody who’s focused on symptom management is. And the combination of that approach gives the patient a better chance.
Jackson: One reason patients put on their lipstick and try to get put together when they see their oncologist is they don’t want that doctor to pull back on their chemotherapy.
You encourage cancer patients not to think about percentages. Why?
Ryan: You are not a number. You are not an average. I start with the best-case scenario, because that’s the hope. My job is to give you the best chance at the best case. Then I explain the worst-case scenario [and] now here’s what we’ve got to do to get to the best-case scenario.
Can you each boil down your advice to a couple of essential tips?
Jackson: Feel empowered to ask questions, and write them down. You’re going to forget, so prepare before you go. Don’t assume that just because you’re going through cancer treatment you’re going to have nausea and pain. Those can and should be addressed, but you have to tell people about them. And be clear about what information you want and don’t want. Some people only want the big picture and others every single lab report.
Ryan: Know the pathology and stage of your cancer. If you know it, it will help you with point number two, which is to have a rough framework for your prognosis, and what you need to do to get to the best-case scenario. Third, don’t expect to become an expert overnight. It’s OK to ask the same question over and over again until you can process the answer.
The reputation for oncologists is they’re the most optimistic people in medicine, because otherwise they could never get up every morning. How does being around so much death affect you?
Ryan: We have this running joke in oncology: If God said to you tomorrow, “I’ll give you 80 years and not a day longer,” would you take it? Every oncologist I know would say “In a heartbeat.” Life is a total crapshoot.
Jackson: I know it is dumb luck that it’s not me in that bed. I am acutely aware of that. I know that no one can imagine that this is happening to their loved one. But I actually know that, unfortunately, this stuff happens. The only thing for me is to stay engaged and remember that [loved one] is their only mother.
How has the emergence of immunotherapy (treatments that use the body’s own immune system to fight cancer) affected care? Especially the “miracle” cases we see reported in the media?
Jackson: For a small percentage, the cancer melts away. For most people, nothing happens. And for a small percentage, it’s deadly.
Ryan: When you’re framing the best- and worst-case scenarios, for some cancer diagnoses, the best case has changed dramatically. Ten years ago, if somebody got diagnosed with metastatic cancer of unknown primary [origin] and you were waiting for the pathology to come back, you’d say a little prayer that it didn’t come back as melanoma. With melanoma, there was nothing you could do. Now you say a little prayer that the badness is melanoma, because now you’ve got a shot at being cured, a shot at being Jimmy Carter [immunotherapy reversed his terminal melanoma]. But sometimes when patients ask for immunotherapy, we know with particular cancer diagnoses— at least right now — there’s close to a zero percent chance of it working.
How about targeted therapy (drugs designed to stop the spread of cancer by going after specific genes or proteins)?
Ryan: Targeted therapies so far haven’t had the “cure” kind of response. People can live for long periods on targeted therapy but will almost always develop resistance. With immunotherapy, there’s a subset of people where the cancer never comes back again.
What does the future hold for cancer care?
Ryan: We are in the golden age of oncology. It’s incredibly exciting. Are we going to get to the point where no one is going to die from cancer? No. But I think we will get to the point of making this a chronic illness for people. In fact, the fastest-growing subset of patients with metastatic cancer are those who are neither in their first year of diagnosis or their last year. They are living with cancer for multiple years.
Ultimately, the real breakthrough will come when people never get Stage 4 cancer. There’s research going on today with technologies like circulating tumor cells, which hopefully will be able to tell you through a blood test that you have an early-stage cancer, when it has a 90 percent cure rate. That’s the Holy Grail. And that day may not be that far away.Interview was edited and condensed. Neil Swidey is a Globe Magazine staff writer. E-mail him at firstname.lastname@example.org or follow him on Twitter @neilswidey.