From diagnosis to treatment, the disease triggers many complicated feelings.
“My head was a mess” is how Florence Kurttila remembers her state of mind when she learned she had cancer. “I started automatically thinking how much trouble I was in,” says Kurttila, who was diagnosed withstage II colorectal cancer at age 48. “When the doctor left, I found myself so nauseated I was sick for a good hour. I thought, ‘Got to pray. Got work to do. I just don’t know how I am going to do it.’ ”
From diagnosis through treatment, dealing with a disease like cancer is an emotionally charged ordeal that triggers all kinds of feelings. “It’s important for patients to understand for everything that happens physically, there’s an emotional response,” says Anne Coscarelli, PhD, director of the Simms/Mann-UCLA Center for Integrative Oncology and a licensed psychologist. Shock, fear, sadness, and loss are “all very much part of their experience, and they need resources to help them cope,” she says.
Laura Dunn, MD, director of psycho-oncology at the University of California San Francisco’s Helen Diller Family Comprehensive Cancer Center, says patients facing a cancer diagnosis need to be honest about their emotions. “People end up feeling bad about feeling bad because they’ve absorbed this message that they need to ‘think positive,’ ” Dr. Dunn says. “A big part of the initial struggle with a diagnosis is trying to not feel guilty about not feeling positive. People shouldn’t feel bad about getting help.”
Cancer treatment can set off its own emotional rollercoaster, as doctor and patient chart a course of action and monitor the results. “My immediate feelings were that I could do this,” Kurttila says. “I can still work. If I take my chemo on Friday, I have two days to recover until work.”
Kurttila reached out to support groups to handle the stresses of treatment, but she tried to spare her loved ones. “I was exceptionally stubborn with my family,” she admits. “I wanted them to know I was strong and was going to fight. I went tochemo alone so I wouldn’t have to put them through watching everything.”Dunn says many patients consult her for the first time once their treatment is complete. “Some people cope well during their treatment because their oncologists, nurses, friends, and family rallied around them, and then that can fall away,” she says. “Some have unrealistic expectations that everything will go back to normal once treatment ends. It’s a hard period of transition.”
Psychologists stress that patients need to find what coping techniques work best for them at every stage of their illness and treatment. These may include psychotherapy, yoga or other stress-reduction classes, support groups, and spiritual counseling.
“People often think they should do this or that,” Dunn says. “There’s no recipe for how to cope. It’s whatever works for you.” The UCSF Medical Center websiteprovides information about many services available to meet the specific needs of cancer patients and their families.
“Your feelings, your tastes, your sleep patterns, your family life, your activities…everything will change,” says Kurttila, 61, who lives in Sacramento. “I prayed a lot… I ate what I wanted to, and sometimes that was good and sometimes I paid the price. I tried to keep up my daily grind until I got too tired, and then just did what I could.”
The emotional, psychological, and social effects of cancer are very personal. “You don’t know where the emotional potholes are going to be…but you can guarantee that there will be some,” Dr. Coscarelli says. “You want to have resources to go to when those happen and figure them out early, so you can come back to them whenever you might need them.”
Kurttila, has been cancer-free since 2002, but even remission can mark a difficult emotional transition. “People struggle with their new selves,” Coscarelli says. “They may have physical losses or function differently. They have to figure out what to share with others.”
Kurttila also knows what it means to care for someone with cancer. Five years into her remission, her husband Kurt was suddenly diagnosed with lung cancer at age 57. “He had such horrible side effects from treatment. One day we walked out of the hospital and he said, point blank, ‘I don’t think I can do this,’ ” she remembers. “All the fight temporarily went out of me. I cried my eyes out.” Kurt passed away two months after his cancer was discovered.
What has helped Kurttila the most is talking with other survivors and being an advocate. “I shared a lot with the patients and other cancer survivors. They will give you hope and encouragement,” she says. “Being an advocate is the best thing you can be…besides healing others and supporting others, you heal yourself a little more with each thing you do. If sharing my stories helps one person get through surgery, treatment, or one more day of pushing, it is so worth it.”