After months in Seattle for a bone-marrow or stem-cell transplant, most patients long for the day that they will head home to a "normal" life, free of daily clinic visits, pills and blood tests.
Yet even when treatment is successful, re-entry into former routines and family life can leave some transplant survivors questioning just what a normal life really means. Lingering side effects from treatment, fear that cancer might return and making sense of what the disease has meant in his or her life can take a toll on a patient's body and mind.
Identifying the challenges common among transplant survivors and developing strategies to manage them is the focus of the Clinical Research Division's Biobehavioral Sciences group, headed by Dr. Karen Syrjala. Based on years of patient feedback, the team — unique among transplant centers — develops intervention strategies designed to ensure the best possible quality of life for survivors and their families. One of the key problems the group has identified and works to alleviate is sexual dysfunction, a post-transplant complication with both physical and psychological roots.
This year, the team will complete a five-year nationwide study to test whether patients and their caregivers dealing with recovery issues such as sexual dysfunction benefit from a telephone-based educational program. What they learn from this and other research is shared with doctors and nurses, in the center's Long-Term Follow-Up program, who help former patients obtain the best medical outcome and quality of life during post-transplant life.
Syrjala, a clinical psychologist, said that overall, psychological health is excellent among transplant survivors. Still, her group's research has found that some issues unique to this group can persist months, and even up to 10 years, after treatment.
"Cancer patients are very resilient and typically have excellent coping skills," she said. "Yet they have been through an experience that leaves them with special needs and risks."
Syrjala's group has found that some of the common concerns among transplant survivors are fatigue, cognitive problems, worry about relapse and, for women, hormonal changes brought on by the high-dose chemotherapy and radiation condition they receive pre-transplant. This conditioning regimen can bring on premature menopause in women who were not menopausal before transplant.
Sexual dysfunction brought on by hormonal changes has been one of the key areas identified and addressed in the phone-intervention study conducted by Dr. Janet Abrams, a clinical psychologist with the team.
"Women who were participating in our research told us over and over that they needed better information about sexuality," she said. "We know that women lose estrogen because of the transplant conditioning, which really affects sexual functioning. Graft-vs.-host disease can also make sex uncomfortable."
Sexual side effects
Male transplant patients also may experience sexual side effects after treatment due to reduced levels of testosterone caused by high-dose chemotherapy. In addition, prolonged steroid therapy used to treat post-transplant complications also may lower testosterone levels. Most male patients' hormone levels and sexuality return to normal after the first year or after they finish steroid therapy. Research to identify the physical and behavioral reasons underlying long-term male sexual dysfunction — and to alleviate it — is underway.
Many of these physical effects can be alleviated with hormone therapy and other medications. Yet sexuality is also affected by psychological factors that can be affected by cancer, Abrams said. A patient's body image and how they feel about themselves may change after treatment, contributing to sexual dysfunction among patients of both sexes.
"Patients often don't feel attractive to their partners when they have a catheter coming out of their chest, or when they don't look like themselves while taking steroids," she said. In addition, partners may be afraid of hurting the patient or exposing them to germs while the immune system is still in a weakened state.
In an earlier study involving in-person educational sessions with couples, Abrams found that the most effective assistance she could provide to patients was simply to get partners to talk to one another honestly.
"This is a vulnerable topic even for couples who are not dealing with transplant recovery," she said. "In our in-person intervention study, as well as in the phone-intervention study, the key focus has been to teach couples communication skills."
For example, if a patient expresses worry that he or she is now too unattractive for physical intimacy, Abrams encourages the patient to share those concerns with the partner.
"Mostly it is just a matter of getting couples to open up to one another, which helps to reintroduce intimacy," she said. "Then they are usually very talented at finding ways to make things better."
Aspects of a quality life
In the phone-intervention study — which also addresses topics other than sexual dysfunction — Abrams conducted nine telephone sessions with the patient or couple over a one-year period beginning one month after the patient is discharged.
"Some in the medical community, and even couples ask, why worry about sex when they are alive after cancer, and when they are still getting over the fatigue and treatment effects," Abrams said. "But we find that if couples refrain from sex for a year, it's much harder to reintroduce this intimacy into their relationship. Transplant survivors have every right to try to achieve the best quality of life they can. Sex is an important part of life for most people."
In a future study, Syrjala's group plans to address late-term complications, which can emerge or persist among survivors five to 10 years post-transplant. The team will create a Web-based intervention program to help survivors address these issues.