Armed with powerful new drugs, sophisticated screening, and promising research, doctors treating cancer in recent years have had a primary mission in mind: Find the cells, destroy them, and send patients home to live the lives they have prolonged.
Success has been phenomenal in that regard, and the number of survivors has tripled in 30 years. Today 66% of adults who receive a cancer diagnosis will be alive five years later, up from 50% in the 1970s, statistics show. But now, more than 12 million Americans who survived their cancers are asking, What happens to me from here on out?
Cancer centers everywhere, including New England, are trying to answer that question by developing life plans that are as organized and individual as the treatment itself.
Nurses Hold Key
The Lance Armstrong Foundation has given a huge boost to that end, helping fund Livestrong Survivorship Center of Excellence programs in major cancer centers all over the country.
Kenneth Miller, MD, director for survivorship programs at Dana-Farber Cancer Institute in Boston, an Armstrong center of excellence, says nurses will be the leaders in survivorship programs because the personal nature of their care is crucial to helping patients understand and cope with the way their lives have changed. Nurses may have to get even more personal, he says, in asking about a patients sex life or relationships, for instance.
When you ask cancer survivors what’s on their mind, the first thing they say is fear of recurrence, Miller says. The second is sexuality. Its very good to ask them, Hows your sex life? Decreased libido, dryness, and pain [during sex] can follow cancer treatment, and patients may be relieved to be able to talk with a nurse about these issues rather than their doctor, he says.
Wellness often is underemphasized in survivorship plans, he says, and conversations should include stopping smoking, good nutrition, and exercise plans.
Signs Along Road Ahead
Healthcare providers are finding a disconnect when patients leave the care of an oncologist. They often are unprepared for what might happen down the road. In addition to sexual dysfunction, they may experience fertility issues, fatigue, bone loss, and changes in relationships and in dealing with societys expectations. They also may be at risk for other cancers.
Helping cancer survivors move forward goes beyond oncology and is an issue for every nurse because nurses in every discipline will need to watch for signs down the road, says Carol Curtiss, RN, MSN, BC, a clinical nurse specialist consultant for Curtiss Consulting in Greenfield, Mass.
Many patients werent told or dont remember being told that there could be long-term effects, she says. We have a lot of work to do to educate not only healthcare providers but also to educate the patients and families on what to look for.
Group Effort to Test Pilot Plan
These concerns of preparing survivors for the future are so prevalent that healthcare plans, advocacy groups, universities, and research centers are all searching for answers. In February, the UCLA Cancer Survivorship Center, the National Coalition for Cancer Survivorship, WellPoint, and Genentech joined forces to launch Journey Forward, aimed at helping survivors and their physicians develop life plans. Initially, it will serve breast and colon cancer survivors in five pilot states New Hampshire, California, Colorado, Nevada, and Maine with the intention of spreading geographically and to different kinds of cancers.
In 2005, the Institute of Medicine recommended that every cancer patient receive at the end of initial treatment a treatment summary and a plan to help him or her stay well. These plans should include diagnosis, treatment, and potential consequences; schedule for follow-up visits; tips on healthy living and preventing new cancers; legal rights affecting employment and insurance; and the availability of support services, the institute advised.
When Pieces Are in Place
So how will these programs work best within a financially stretched healthcare system with a work force increasingly falling short of demand?
A pilot program at the Livestrong Survivorship Center at the University of Pennsylvanias Abramson Cancer Center addresses that issue in its integrated-care model, in which nurse practitioners eventually care for or refer patients who are ready to transition to a primary care setting.
The time to transition is dictated by the type of cancer and by the provider, says Linda Jacobs, RN, PhD, CRNP, AOCN, CS, director of the center.
When its the appropriate time, the nurse practitioner will be doing the end-of-treatment summary and care plan, not the physician, Jacobs says. Its not a burden because we already have the nurse practitioners in place, and theyre already seeing patients throughout the trajectory of care.