Long-Term Follow-Up

Life after transplant: a rich journey

Dr. Stephen King

Focusing on the good helps cope with the bad

Fall 2008

In Dr. Stephen King's long list of former Seattle Cancer Care Alliance transplant patients, one stands out-a young man who had troubled relationships with his wife, family and faith.

But during his treatment, the man revalued his faith, and reconciled with his wife and family. "Even though he was battling cancer, his life got better than ever before," said King, manager of Pastoral Care at SCCA.

For many years, survivorship research focused on post-traumatic stress, a natural area of study given the difficulty of cancer treatment, including bone marrow transplants.

However, anecdotal evidence among doctors and nurses who were treating them revealed a different picture: Instead of showing signs of stress and declining lifestyle, many patients showed an increase in satisfaction in many aspects of their lives. And now, thanks to several studies, survivorship research is shifting gears.

"We used to talk about post-traumatic stress. Today, we talk about post-traumatic growth or positive growth," said Dr. Karen Syrjala, director of the Survivorship Program at Fred Hutchinson Cancer Research Center.

"For the first 10 to 20 years of transplants, we focused on the problems. Now, we are reminded of the need to discuss all the things that go well with patients," she said. In one of her studies of 200 former Hutchinson Center patients, Syrjala found that 90 percent said they had a greater appreciation for life; 80 percent were more satisfied with their lives; and over 60 percent were more satisfied with their religious lives.

"For most people after transplant, their appreciation for life, their satisfaction with life, their place in the world, has improved," Syrjala said.

In the past, treatment often dwelled on what was wrong, Syrjala said. "Focusing on all the things that are wrong makes people feel like helpless patients. Today, what we see consistently is that people recover faster and have fewer complications when they're able to balance their problems with the positive aspects of their health and lives."

Syrjala is careful to point out that recovering patients should not feel the need to be "falsely optimistic."

"The biggest long-term problem for cancer survivors is how do you live knowing that you're more vulnerable. One way to deal with that is being able to accept the worries that you have, but not to inhabit them," she said.

Dr. King has seen these changes firsthand in his nine years at the SCCA. He said many of the patients he has worked with have gone through some kind of personal transformation.

"Some have told me they're going to work less and spend more time with the family; others wanted a chance to correct past mistakes or take risks they were afraid to take before," he said.

"In many of them, I have seen a general sense of appreciation, of gratitude; they notice the little things in life. If they had a conflict with family, they want reconciliation.

"Through this experience with cancer, there's something beyond the every day. There becomes an increased focus upon life beyond just the 'me.'"

For many patients, there's an easy way to define that change, he said. "Even if I have cancer …" they have found they can still do many things. This is an important reminder for recovering patients, Syrjala said. "There has to be a readiness to balance life, not to focus on just one thing. People should be able to say, 'Now I can really focus on those things that matter the most to me.' "

Some patients can find their own way. Others may need guidance. One avenue of help includes LTFU, which can refer patients if they need assistance finding resources to help them. But no matter what avenue they choose, "nearly everyone can find growth opportunities," Syrjala said. For some people, that may mean creating a new thing to care about.

"I have never found someone who couldn't make at least one thing better," she said.