When life goes on
Cancer changes people, and when they survive, they face a raft of physical and emotional issues. Emory offers programs to help them cope. Here’s the journey of one pediatric cancer patient, Darren Johnson, who made it.By Robin Tricoles
Darren Johnson spent his 19th birthday undergoing a bone marrow transplant. A few weeks earlier, Johnson had been diagnosed with myelodysplasia, a form of leukemia in which the bone marrow fails to produce enough normal blood cells. He endured a year of treatment and then a lengthy recovery.
Now 26, Johnson attends the Medical University of South Carolina, where he is studying to become a physician assistant, a very different career from the one he had in mind when he was diagnosed with cancer eight years ago.
If someone gave me a chance to go back and change what I went through, I don’t think I would,” says Johnson, a 2007 Emory graduate. “It was a really important experience I had to go through. It changed my outlook. It changed my life.”
Like Johnson, people diagnosed with cancer undergo fundamental life changes, each with a personal experience of the disease and treatment. They face a multitude of issues: changes in personal relationships and careers, financial pressures, physical difficulties, concerns about sexuality, and emotional fallout.
Only relatively recently have health care providers turned serious attention to the emotional well-being of cancer patients. They have realized that easing the emotional burden of a cancer diagnosis for patients and families may actually improve treatment and outcome.
The Winship Cancer Institute offers a collaborative approach for dealing with cancer that begins as soon as a patient is diagnosed. The program considers the emotional, psychologic, and physical symptoms associated with cancer and its treatment. And options for patients may include cognitive therapy, antidepressants, or both. Anger, fear, and anxiety mixed with the physical and emotional side effects of cancer treatments can lead to depression during and even after treatment, when patients may feel isolated.
A cancer diagnosis is tough for families too. Johnson believes it was harder on his parents than him. “You don’t want to see your child struggle,” he says. “Even now when I get a cold, my father gets concerned.” His younger brother, Colin, 16 during Darren’s treatment, had a particularly difficult time seeing his brother in the ICU. (The two now share an apartment in Charleston.)
And even when patients get beyond the initial diagnosis and treatment, they still know they are at risk of a cancer recurrence. “That’s always in the back of your mind,” Johnson says. “Whenever a simple thing comes up, a muscle ache or a bump, you think this could be a sarcoma or who knows what.”
More and more people are living longer after being diagnosed with cancer thanks in part to better treatment. But researchers have also found improved outcomes for patients receiving physical and emotional support before, during, and after treatment.
That’s why Winship offers patients and their families a wide variety of programs and services aimed at improving outcomes and quality of life. For example, patient and family psychologic counseling, financial services, support groups, and nutritional advice are some of the many services available through Winship.
For a complete list of support services, please visit: Winship Cancer Institute
Learning from other survivors
Although family and friends often rally around patients, talking with others who have been diagnosed with cancer is invaluable. That’s where cancer support groups come in, such as the one at Winship that pairs a newly diagnosed patient with a partner who has recovered from cancer. Survivors can share their own experiences and listen empathetically as a new patient begins a process that is fraught with anxiety. Studies have shown that support groups like this one help participants feel happier, less isolated, and more hopeful.
“You can’t really complain to other people who haven’t had cancer because no one really understands what you’re talking about,” Johnson says, who began attending a cancer survivor group of young adults who meet in Atlanta a year ago. “Everyone there goes through the same things, no matter what kind of cancer they are diagnosed with. We talk about all sorts of things. We even talk about sexuality, which is a big, big issue for a lot of people.”
When people are diagnosed with a life-threatening disease like cancer, survival is paramount, and other activities, including sexual intimacy, often get pushed aside. But that doesn’t mean they go away. Some common sexual issues that cancer survivors face include impotence, difficulties with emotional and physical intimacy after body-altering treatment, premature symptoms of menopause, and infertility.
While Johnson hasn’t encountered any issues with intimacy, his treatment did leave him infertile. “I was lucky enough to be of age to have some sperm frozen,” he says. “The doctors at Children’s Hospital of Atlanta said, you really want to think about this because you’re going to care about this later on in your life. And they were right.”
Although cancer survivorship in kids is now greater than 80%, the side effects of treatments can cause difficulties later in life. Children’s growth can be stunted, internal organs damaged, cognitive development delayed or squelched, and fertility lost. Many of chemotherapy’s long-term effects are silent for years before they rear up to cause heart issues or other problems elsewhere in the body.
Johnson, for example, has had two hip replacements because of the side effects of the drugs that cured his cancer. The replacements have allowed him to stay physically active by participating in low-impact sports such as swimming and biking, but high-impact sports such as basketball are no longer a part of his life.
Staying physically active is especially important for cancer patients. Exercise can play an important role in controlling fatigue, improving cardiovascular fitness, losing or maintaining weight, improving mood, and managing stress. And so can the right diet.
Many foods—particularly fruits, vegetables, and legumes—display potent anticancer activities, according to Emory medical oncologist Omer Kucuk. For example, specific food compounds such as soy isoflavones and the spice curcumin may increase the effectiveness of chemotherapy and radiation therapy in patients with advanced prostate cancer.
“The compounds sensitize the cancer cells to chemotherapy and radiation while protecting normal tissues from the side effects of these treatments,” says Kucuk.
What’s more, many nutritional compounds used for therapy or disease prevention have few, if any, side effects. Lycopene, a carotenoid in tomatoes, for example, has cancer-preventing properties. Kucuk recommends eating a couple of ounces of tomato paste every day as part of a regular diet.
Side effects—the good kind
Despite the difficulties experienced in the aftermath of cancer, patients can thrive. Some end up tapping previously unacknowledged talents and desires, such as happened with Johnson.
“I started my freshman year in college wanting to be an anchor for ESPN,” he says. But while I was in the hospital, I realized that I would like to be a part of caring for people, so I decided to go into medicine. The people at the hospital were doing great things for me, and I realized then that I wanted to do this for other people. It really changed my path. I’m so happy. I love my life. It’s great to wake up every morning and think: what can I do today.”
Finding a reset button
Andrew Miller and his colleagues have an idea about why some cancer patients continue to suffer from emotional and physical problems even after their cancer is cured. It rests in what he and other researchers in Emory’s Mind Body Program are learning about the effects of the immune system on the brain and behavior.
When the immune system is activated, it triggers a series of events leading to the release of cytokine molecules that cause inflammation. These cytokines can get into the brain and wreck havoc, in essence changing the chemistry and circuitry of the brain and resulting in depression, fatigue, and impaired memory and concentration. “We believe this process is activated in cancer treatment when surgery, chemotherapy, radiation, or even psychological stress, set the immune system in motion,” says Miller.
By the end of the six-week treatment for breast cancer, for example, 90% of patients experience radiation-induced fatigue. But even after the therapy ends, up to 20% of patients continue to be fatigued. Miller believes this continuation may have to do with changes in the immune system that get turned on during treatment and fail to switch off after treatment ends. This chronic fatigue can ruin a person’s quality of life.
One Emory donor saw his wife struggle with symptoms of depression and fatigue even after her breast cancer was successfully treated. Emory researchers now have parlayed a $450,000 gift from that donor into more than $4 million in national grants to study how they can counteract the debilitating psychological and physical effects of inflammation from cancer treatments.
Their research in essence attempts to find a reset button for cancer patients whose treatments set off inflammation. They are studying the specific pathways and genetic changes that occur in response to treatment and using brain imaging to pinpoint the best places to look for cytokine damage. They also are examining whether lifestyle changes, such as mindfulness meditation and other stress-reducing techniques, can teach the immune system to better tolerate stress and limit inflammation. And they are exploring whether drugs (such as infliximab, a cytokine blocker) or naturally occurring ingredients (such as curcumin, found in the Indian spice tumeric) can reduce inflammation and treat depression and fatigue.
The infliximab trial, the first of its kind in the United States, is attempting to block the release of cytokines in patients whose depression has failed to respond to all other treatments. “If we can block cytokines and treat depression, that is a game changer,” says Miller. –Rhonda Mullen