Living With Cancer - Find out about promising scientific breakthroughs and read inspiring stories of courageMar 16, 2016
by Bill Newcott, AARP Bulletin, March 2016
How long do I have? Can I live a normal life? Will I be cured?
Those are the questions that every cancer patient has — and the questions every doctor is reluctant to answer definitively. In 2016, though, thanks to tremendous strides in treatment, the answer to all of them might be: "It looks good."
When Nina Beaty asked her oncologist about her prospects, it was with a sense of urgency, she says.
"I needed to know what to do with whatever time I had left," she says, gazing across the window-lined chemotherapy waiting room at the world-renowned Memorial Sloan Kettering Cancer Center in Manhattan.
A lung cancer patient, Beaty is a beneficiary of cancer screening — but also a victim of its whiplash-inducing implications.
"I didn't have any symptoms of cancer at all," says Beaty, 62, who started smoking at age 17 and quit at 30. "A friend of mine died of lung cancer, and I decided, 'Why not get screened for it?' "
The scan, in January 2014, showed not just lung cancer but hyperaggressive small-cell cancer, almost always caused by smoking.
Running its natural course, the cancer likely would have killed Beaty in three to 6 months. Reluctantly providing some semblance of a survival timetable, Beaty's doctor allowed that, because of early detection and with aggressive treatment, she might live another 2 years.
For now, Beaty and her cancer seem to have struck a delicate balance, thanks to an immunotherapy drug administered in a clinical trial. But her outlook is still forged in the furnace of those days when she thought she could count her remaining weeks on two hands.
"I started thinking, Who am I? What should I do?" She wanted to leave her mark, not an easy task as a member of a celebrated family that includes the composers Richard Rodgers (The Sound of Music) and Mary Rodgers (Once Upon a Mattress).
"I figured I had until I was 80 to work on my legacy," she says. "Suddenly, everything got telescoped. But I still wanted to figure out my purpose. My meaning."
For Beaty and others, cancer is becoming something you live with, perhaps with a renewed focus on finishing life's unfinished business, rather than something you inevitably die from. "Now that my tumors have stabilized and I only go for the 1-hour infusion every 2 weeks, I feel back to normal, taking thoughtful steps toward creating a second life for myself."
In 1975 the 5-year survival rate for all cancers was 49 percent. In 2016 that's up to 69 percent. Nationwide, some 15 million people have either had cancer or, like Beaty, live day to day with cancer as an unwelcome companion. And as more people live with cancer, they are grappling with how to think of it differently — as something to be managed rather than to be fought to the death. The medical establishment, for its part, is making impressive strides in learning how to treat "the emperor of all maladies" more humanely and effectively.
As cancer treatment centers go, St. Vincent Cancer and Wellness Center in Worcester, Mass., is no behemoth like Sloan Kettering. But the facility is part of a movement to centralize all aspects of a cancer patient's treatments under one roof. It is designed as a one-stop shopping facility — three floors of suites offering hematology, radiation, dietary counseling, rehabilitation, state-of-the-art diagnostic tools, and physical and occupational therapy.
Julie Silver, M.D., an associate professor at Harvard Medical School, appreciates the compact yet functional design of St. Vincent — and her interest is not just academic. Silver's life was thrown into turmoil more than a decade ago when, at age 38, she was diagnosed with breast cancer.
"As my treatment progressed, I got very, very sick," says Silver, now in her 50s. "After my last treatment I asked my oncologist, 'What do I do next?' He said, 'Go home, try to heal and, if you can, go back to work some day.' That was devastating. I had three little kids. I wasn't in any position to rehabilitate myself. I needed more than that, and so does everyone else."
Inspired by her ordeal, Silver cofounded Oncology Rehab Partners, a group that helps cancer treatment centers establish STAR Programs (Survivorship, Training and Rehabilitation), offering both rehabilitation and prehabilitation services to cancer patients. Now there are about 500 hospitals across the country with certified STAR Programs — St. Vincent's among them — that help prepare patients for treatment through diet and exercise.
A brighter day
Even with the most thorough preparation, though, the battle against cancer can be fraught with debilitating chemotherapy side effects, emotional fatigue and depression. Too often, patients find themselves fighting alone.
It happened to Emma Houston after she was diagnosed with breast cancer in 2005.
"My husband and I had 35 good years together," she shrugs. "But life happened. Cancer takes its toll on families." She got divorced 4 years after her cancer diagnosis.
In any case, says Houston, 60, you're better off surrounded by supportive people who actually want to be there.
Now 5 years cancer-free, Houston has started an event planning business. It's called Brighter Day Productions Celebration Planners, she says, because "When I was diagnosed I said, 'Lord, there's got to be a brighter day.' And as a cancer survivor, I celebrate every day."
Houston received treatment at the Huntsman Cancer Institute (HCI) at the University of Utah. Nestled at the foot of the Wasatch Mountains overlooking Salt Lake City, HCI was built from the ground up to infuse cancer treatment with humane, hopeful compassion — in essence, as an emphatic counterpoint to every blank chemotherapy room wall, every impersonal waiting room that once defined the treatment of cancer in America.
HCI's chemotherapy infusion center is a sprawling, 31-chair room with floor-to-ceiling window views of the valley and individual enclosures, each with a flat-screen TV. It's an extreme example of a nationwide movement toward spacious, sunlight-soaked oncology rooms that make life more tolerable for cancer patients.
'The great equalizer'
The man who envisioned HCI's embracing attitude toward cancer patients, Jon Huntsman Sr., is a legend in the packaging business. He donated $125 million to build the Huntsman Cancer Institute, and millions more to ensure the facility's long-term success. He personally consults on the warm, welcoming building designs, and his wife, Karen, helps select the original art that hangs on virtually every wall.
Huntsman has had four different kinds of cancer himself; his mother died in his arms of breast cancer in her 50s, his stepmother died of ovarian cancer and his father died of prostate cancer.
Cancer, says Huntsman, 78, is "the great equalizer. Economics, race, ethnicity, geography — when it comes to cancer, we're all the same." His experiences with the disease, though, have given him a renewed sense of energy.
"It's exciting that the hospital stay for a radical prostatectomy has gone from 3 days to 24 hours," Huntsman says. "It's exciting that so many children's cancers are curable."
A truce with cancer?
Instead of an all-out war to defeat cancer, might we better use our resources to strike a truce with it? Not all low-grade cancers need to be treated aggressively, and in some cases the treatment may be worse than living with the disease.
"Prostate cancer is a classic example," says Will Lowrance, M.D., who specializes in urologic cancers at HCI. "In many cases, we decide upon no active treatment — just surveillance."
It's a way of thinking that is just now occurring to 25-year Navy veteran Colgate Salomon. A routine MRI revealed kidney cancer in 2006, and surgery seemed to resolve it. Then one day in 2011, he was overwhelmed with a headache and disorientation.
"The cancer had metastasized to my lungs and brain," says Salomon, as he sips a cup of java in a Virginia coffee shop. "I had three chest surgeries and brain surgery. I had to learn to walk again.
"It's funny, flying for the Navy, you get to feel bulletproof. I was like, 'What just happened?' "
Today, Salomon — married and the father of two grown kids — is on an experimental drug through Johns Hopkins hospital in Baltimore that, he says, is holding his cancer "at bay."
"I've been taking a chemo pill every night for a year," he says. "There are side effects. Some mornings I just don't want to get out of bed, but that's not the way to go about life. I know God has a plan. I've felt his hand before — at times when I was flying in the Navy and something bad should have happened up there but didn't."
He adds, "I'm not under an illusion that there is some kind of miracle cure and I'm going to walk away from this thing. I've just got to learn to live with it. Every cancer survivor finds their own way to fight it."