Cancer survivors face growing health care gap

After Teresa Levitch underwent successful chemotherapy and radiation for the cancer attacking her immune system, she believed her health problems were over. Now she knows better.

For more than 10 years after her treatment, she felt pain and muscle fatigue in her upper body, and her range of motion was limited. She went to several doctors, she said, but none could help her. Then she found the cancer survivor program at Memorial Sloan-Kettering Cancer Center in New York, which identified her illness as radiation fibrosis syndrome and began treatments that have made her feel better.

The Sloan-Kettering program is one of seven in the United States exclusively focused on long-term cancer survivors, a growing group that is facing a treatment gap between the successful end of cancer care by their oncologist and adequate follow-up by other doctors, according to reports this weekend at the American Society for Clinical Oncology annual meeting.

For Levitch, 59, a former teacher from Verbank, N.Y., the program a “life saver,” she said in a telephone interview. “It was a comfort to finally hear I wasn’t crazy, to know that what I was feeling had a reason and a name.”

Over the next 10 years, the number of Americans who live at least five years with cancer is projected to jump 37 percent to 11.9 million, according to a U.S. National Cancer Institute report. It’s a movement that’s relatively new, doctors say, and the medical world is only now beginning to react to the physical and emotional toll survivors live with after their cancer is controlled.

“In terms of understanding what the needs of survivors are, we’re in a very elementary place,” said Rebecca Kirch, director of quality of life and survivorship at the American Cancer Society, in a telephone interview. “Until very recently, cancer diagnosis didn’t end in survivorship. It’s a new and wonderful problem to have, but now we need to deal with the toxicity of treatment.”

Chemotherapy and radiation, the base weapons used to attack cancer even when other, newer medications are used, can carry severe side effects that last for years, including heart damage, the death of peripheral nerves and the radiation syndrome Levitch is being treated for, which is exhausting and painful.

Other physical problems are cancer-specific: lung cancer patients who underwent surgery, for instance, experienced severe chest pain afterward; breast cancer patients have a higher risk of carpal tunnel syndrome due to fluid retention from having a lymph node removed; laryngeal cancer patients may experience shoulder pain from nerve palsy.

Emotionally, the fallout of all of this “can be huge,” said Alyssa Rieber, the chief of medical oncology at the Lyndon B. Johnson General Hospital in Houston. “We see sexual dysfunction, body image disorders, and depression and anxiety.”

The medical response to these concerns has too often in the past been slow and scattered, Rieber and other cancer specialists said.

The Livestrong Foundation, an Austin, Texas-based cancer charity, has designated just seven cancer centers nationwide as Survivorship Centers of Excellence, including Memorial Sloan-Kettering. While awareness is growing, the centers are models for what other hospitals should be striving to achieve, said Julia Rowland, director of the National Cancer Institute’s Office of Cancer Survivorship.

“Patients want to know what’s next, what’s the plan,” Rowland said in an interview at the oncology meeting in Chicago. “For a long time, it was the oncologist saying, ‘Your cancer is treated, go home, and I hope I don’t see you again.’ That creates a void. Some patients do remarkably well, but very few get away without long-term effects. Our cancer therapies are quite toxic.”

The centers of excellence offer care by oncologists, primary care physicians and doctors with a wide range of specialties as well as rehabilitation specialists, Rowland said. That’s because survivors don’t have uniform needs, she said.

Until about 10 years ago, the main push in survivorship involved simply making sure the people who had been treated didn’t have a cancer recurrence, said Mary McCabe, who is director of the Sloan-Kettering’s survivor program.

That began to change with a 2005 report from the U.S. Institute of Medicine, which provides medical advice to policymakers and the public. The report found that one in five people who had been treated had work limitations stemming from cancer as much as five years later. About 22 percent of the survivors were women with breast cancer, and another 18 percent with prostate cancer, the report found. The third-most common survivors were those with colon and rectal cancer.

The IOM report urged that all cancer patients get a care plan that summarizes their treatment and outlines a follow-up strategy. That would tell patients what kind of screening they need and how often to get it. The plan should be written by the principal oncologist, the IOM said.

More recent research suggests survival centers, like the one at Sloan-Kettering, have the potential to fill a big treatment need. Only one in five oncologists said they provided a treatment summary that included a follow-up plan to breast and colon cancer patients after successful treatment, according to a survey of over 1,100 oncologists and 1,000 primary-care doctors presented at the clinical oncology society meeting.

The same survey shows that only a third of primary-care doctors who work with cancer survivors said they routinely received any type of treatment summaries from oncologists, and just 13 percent said they received follow-up plans.

In a separate report, only half of cancer patients reported receiving a summary of their treatment, and just 17 percent said they got a survivorship care plan, according to a Livestrong Foundation presentation at the Chicago meeting. Those who received a summary of care were more likely to have discussions with their health-care providers about long-term side-effects, and lifestyle recommendations to prevent recurrence and help with emotional needs, according to the presentation.

“There’s clearly some disconnect” still, said Rowland, who was an author of the physician survey. “We hear primary care physicians saying that they can do long-term care, but they’re anxious and want guidance. We can communicate that.”

Michael Stubblefield, who treats Levitch at Sloan- Kettering, suggests that follow-up plans sometimes aren’t being disseminated simply because they can take hours to draw up properly.

“There’s no reimbursement commensurate with the amount of work,” he said in a telephone interview. Also, the push for survivorship programs is so new most hospitals simply haven’t gotten around to creating them yet.

“I get patients from all over the country,” Stubblefield said in a telephone interview. “The majority are from community hospitals, which are very good at taking care of the cancer but not very good at taking care of survivors.”

Understanding cases like Levitch’s can be hard for doctors who aren’t familiar with the aftereffects of radiation, Stubblefield said.

Levitch has some movement disorders, migraines, limited range of motion and fatigue. Without specialized knowledge, doctors may not realize that they all stemmed from her life- saving radiation therapy, Stubblefield said. What’s more, side effects from radiation can arise more than 30 years after treatment.

Rieber, at Lyndon B. Johnson hospital, said she is hopeful that a growing emphasis on survivors within the medical community and new technology involving electronic medical records, can help quicken the pace of care for this group.

The baby boomers, those born from 1946 to 1964, are reaching an age when they are likely to experience cancer and other chronic conditions, said the cancer society’s Kirch. The problems doctors are seeing in survivorship are likely to expand due to the sheer volume of patients, she said.

“We have no choice but to now make sure we tend to these problems,” Kirch said. “I don’t think baby boomers are going to tolerate bad quality of life.”