Armed with powerful new drugs, sophisticated screening, and promising research, doctors treating cancer in recent history 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 by that measure, 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 70s, statistics show. But the more than 12 million Americans who survived their cancers are asking, What happens to me from here on?
Cancer centers everywhere are trying to answer that question, developing life plans that are as organized and individual as the treatment itself, and trying to add this component in a way that wont overwhelm a healthcare system suffering through a recession, with ballooning needs and fewer resources.
The Lance Armstrong Foundation has given a huge boost to that end, helping to fund LIVESTRONG Survivorship Center of Excellence programs in major cancer centers all over the country. Armstrong, a seven-time winner of the Tour de France, was diagnosed with advanced testicular cancer in 1996. After aggressive chemotherapy, he returned to professional racing and is now taking his survivorship message around the world.
Mary McCabe, RN, MA, director of one of the Armstrong-supported programs, the Cancer Survivorship Initiative at Memorial Sloan-Kettering Cancer Center in NYC, says treatment of survivors must start with questions that determine more than whether the cancer has come back.
We also want to help prepare patients going forward, making sure patients understand the importance of cancer screening and long-term effects, she says.
One example may be that someone experiences chronic fatigue. Maybe they were treated for lymphoma and have been living with the fatigue for years. Its important to have the patient understand this, so they know that what theyre experiencing is normal.
We also need to identify who may be at risk for second cancer, she says. Women who have had lots of chest radiation, for example, need to know the importance of mammography screening, because they may be at risk for breast cancer. Some may be at risk for cardiac disease because of the treatments they [have] received.
Healthcare providers are finding a huge disconnect when patients leave the care of an oncologist. They are often unprepared for what might happen down the road: sexual dysfunction, fertility issues, fatigue, risk of other cancers, bone loss, changes in relationships, and in dealing with societys expectations.
Because some side effects may not show up for years, patients may not even connect their symptoms with their previous cancers.
These concerns 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 to develop life plans. Initially, it will serve breast and colon cancer survivors in five pilot states California, Colorado, Nevada, Maine, and New Hampshire with the intention of spreading geographically and to different kinds of cancers.Mary McCabe, RN
Kenneth Miller, MD, director for survivorship programs at Dana-Farber Cancer Institute in Boston, 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 minds, 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 can follow cancer treatment, and patients may be relieved to be able to talk with a nurse about these issues rather than with their physicians, he says.
Wellness is often underemphasized in survivorship plans, he continues, and conversations should include everything from stopping smoking to good nutrition and exercise plans.
In 2005, the Institute of Medicine recommended that all cancer patients receive a treatment summary and a plan to help them stay well at the end of initial treatment. These plans should include diagnosis, treatment, and potential consequences; a 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.
This is very slow in coming, says Carol Curtiss, RN, MSN, BC, a clinical nurse specialist consultant for Curtiss Consulting in Greenfield, Mass.
Part of the difficulty is in deciding who completes the summaries and who gets the reimbursements for completion. Plus, a person may see different kinds of oncologists, so pulling the information together can be lengthy.
She emphasizes that survivorship plans are in their infancy and education among providers, patients, and their families will be a long process.
So how will these programs work best within a financially stretched healthcare system with a workforce 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. More traditional models have relied on long-term repeated visits within the oncology setting. In the Penn program, it is nurse practitioners, rather than oncologists, who eventually care for or refer patients who are ready to make the transition to a primary care setting.
The time to make that transition is dictated by the type of cancer and by the provider, says Linda Jacobs, CRNP, PhD, AOCN, director of the center. Instead of relying on oncologists to put together the patient summaries, when the time comes to transfer care to a primary care setting which could take many years a nurse practitioner either helps the patient to make the transition or provides care for the patient.
When its the appropriate time, the nurse practitioner will be doing the end-of-treatment summary and care plan, not the physician, Jacob says. Its not a burden, because we already have the nurse practitioners in place and theyre already seeing patients throughout the trajectory of care.
The Penn program also uses OncoLink, an online program developed at Penn but available to anyone, to help guide patients through what they may expect in treatment and survivorship phases. Using the templates provided, a patient can fill out the relevant cancer information for a patient summary in five to 10 minutes and come away with an individual care plan.
The site is loaded with information on every type of cancer. One criticism is that it has almost too much information.
Maggie Hampshire, RN, BSN, OCN, managing editor of the site, says that may be, but the learning curve is often high.
We did a survey and asked whether patients have been offered survivorship information, she says. Only 12% said they had gotten any information.
The site gets 3.9 million page views a month, says Hampshire. Although it is not a replacement for face-to-face contact, she says, it starts the conversation with patients and spreads access to populations that may not have major cancer centers.
That access to care is the next frontier for survivorship programs. Starting them in major cancer centers is a good first step, healthcare experts say, but because most cancer patients dont get their care at major cancer centers, effectiveness will depend on these services being replicated in community settings.