Cancer centers pushing better survivor care

Between May 2006 and March 2007, Cheryl Bayard's life was all about fighting her breast cancer.

There was surgery, radiation and chemotherapy to endure. She saw doctors and nurses constantly.

Then it was over. Except that it wasn't.

"All of a sudden, they say, 'That's it,' " said Bayard, a retired art teacher who lives near Tylersport in Montgomery County. "You're left with, Now what?"

Bayard was on her own to piece together information about her future medical needs from fellow survivors, guest speakers at support groups and her doctors. She found out she'd have to be on guard for heart problems from the chemo, secondary cancers from the radiation and osteoporosis.

Because cancer treatment has become so much more effective, the "Now what?" of cancer care - what experts call the "survivorship" phase - is a hot topic these days.

There are 12 million people like Bayard in this country - people who are done with treatment but now must live not only with the fear the cancer will come back but with a host of problems created by the toxic chemicals and radiation used to fight the disease.

Focused as they are on just keeping patients alive, oncologists have not made helping patients navigate the complex issues they face after treatment a priority, experts say.

"They kind of like throw you out the window," Bayard said.

That's changing, thanks to the Institute of Medicine, which published an influential report on survivorship called "Lost in Transition" in 2005, and organizations like the Lance Armstrong Foundation (LAF) that are pushing better survivor care. Cancer centers are setting up survivor clinics that focus on helping patients watch for new cancers and manage treatment-related symptoms. They're studying the physical and emotional needs of survivors and trying to improve coordination of care by cancer specialists and primary-care doctors, who may not always connect a new complaint with cancer treatment years before.

"It's really a culture change that has to occur in terms of how patients view themselves, how providers view the patients they're following," said Linda Jacobs, director of the LIVESTRONG Survivorship Center of Excellence at the University of Pennsylvania's Abramson Cancer Center.

A new computerized survivorship program from Penn's OncoLink, a cancer information Web site, just got a big boost from the Armstrong Foundation. The program, which analyzes the ongoing medical risks and needs of patients such as Bayard, will receive $2.3 million from the foundation over four years.

Andy Miller, vice president of programs and policy for LAF, said OncoLink was ahead of the curve in developing survivorship-care plans that people can use easily.

"What we've heard from survivors, this is what they need," he said. "This is what the Institute of Medicine is calling for."

LAF is partnering with Penn to market the computerized care plan, now called OncoLife. A new, co-branded name has not been finalized.

"The reach of the Lance Armstrong Foundation is so great that we have an ability to get this out to many more people," said James Metz, a Penn radiation oncologist and editor-in-chief of OncoLink, which has four full-time employees and a $1 million budget. Volunteer doctors and nurses write most of its reports.

At OncoLink, cancer patients can type in information about their cancer and treatments. Then they get a report that tells them what kind of medical testing they should receive in the future, possible side effects of their treatments and what they can do to keep cancer at bay.

"These treatments we give are the gifts that keep on giving," Metz said. "Toxicities can happen months, years, decades after treatments were given."

Patients like Bayard who've taken Adriamycin, for example, can later develop heart problems. People who've had surgery risk lymphedema, which causes tissue swelling. There often are sexual and fertility problems. It doesn't seem fair, but if you've had one cancer, the report will tell you that you're more likely to get another one. People who've had radiation are in danger of getting a different type of cancer at the radiation site.

Ellen Stovall, acting president and CEO of the National Coalition for Cancer Survivorship, has been advocating for better survivor-care planning since 1994 and is still working to get Medicare to pay for the time-consuming work of producing treatment summaries and care plans. Her chest was radiated after she was diagnosed with Hodgkin's disease in 1971. In 2007, doctors found breast cancer in both breasts "along the fault lines" of her radiation treatment. She also has blood vessel damage often found in people who've received radiation.

The OncoLink program was "very easy to use," she said. "I really liked it."

Stovall knew to be on the lookout for radiation-related breast cancer. Donna Boroch did not.

As a senior in high school, the Lansdale woman was treated with radiation for Hodgkin's disease. She doesn't remember anyone warning her that she was at risk for breast cancer and was shocked to learn she had the disease at 33. Now 43, she's being treated for breast cancer that has spread to her lungs. She's also had precancerous skin lesions and cancer in her thyroid.

The Journal of the American Medical Association last week reported that, even though experts have for 10 years recommended mammograms as early as age 25 for survivors of childhood Hodgkin's, 64 percent of such women are not getting them.

Boroch thinks it's a good idea to alert survivors like her, and their primary-care doctors and dermatologists, of their risks. "It might lead to some unnecessary procedures," she said with a touch of irony, "but so far, I haven't had any."

About 4,000 people have tried the OncoLife program since its debut in May 2007. Only 12 percent had previously received any survivorship information.

Carolyn Vachani, a nurse practitioner who works with OncoLink, spearheaded the complex care-plan project after doctors told her they didn't have the time or money to produce such plans for their patients. That, she said, left the patients "out there with no information and experiencing these problems with no knowledge at all that they could be related to the treatment they received."

She helped compile information about known risks of more than 140 chemotherapies and other treatments.

A weakness of the system is that information about the long-term effects of cancer treatment in adults is spotty, said Patricia Ganz, a UCLA oncologist. OncoLink also is not precise enough to suit her about the treatment patients received. As a result, she said, she finds the resulting care plans too generic, though they're improving.

Ganz has been developing computerized programs that make it easier for cancer doctors to give patients a detailed record of their treatments, another key aspect of survivorship planning. It complements OncoLink's care plan, Ganz said.

OncoLink's program already is in its fourth iteration and the Web site's leaders plan constant revisions.

Ultimately, patients will have less need to go to places like OncoLink for survivorship advice. Penn, Fox Chase Cancer Center and Cancer Institute of New Jersey all are developing or expanding nurse-run survivorship clinics that give patients similar information in person.

Bayard said she already knew about half the information in her 11-page care plan from OncoLink. But she was surprised to learn how long some patients suffer from fatigue and found a section on chemo brain - the fuzziness many cancer patients say they suffer after treatment - fascinating.

So far, Bayard, 63, has had few treatment-related problems - just odd-looking fingernails and numb toes.

The good news for her is that, even with stage-three cancer, her doctors think she has an 80 percent chance of living another 10 years.

"When they first told me 'Cancer,' the first thing you think is death," she said. "Ten years sounds pretty good."

To find the computerized care plans (OncoLife), go to www.oncolink.com