Most Cancer Survivors Say Chemo Fears Unfounded

FRIDAY April 4, 2008 -- Although most cancer survivors polled in a recent survey said they had been fearful of undergoing chemotherapy, most also said the treatments were much less trying than they had expected.

In fact, 94 percent said they would advise others to undergo chemotherapy if their doctor recommended it.

"Like most people, I was filled with fears about chemotherapy, particularly about the possible side effects," said award-winning broadcast journalist and author Linda Ellerbee, 63, who underwent a double mastectomy and chemotherapy after being diagnosed with breast cancer 16 years ago.

Ellerbee spoke at a recent news briefing in New York City, convened to announce the results of the survey.

"It wasn't fun -- no one will tell you that chemotherapy is fun. But it wasn't as bad as I expected, either," Ellerbee said. "The reality is that I believe that I am here today, partly because that treatment worked."

Ellerbee, for decades a renowned journalist at CBS, NBC and then PBS, is also the author of a number of books for both children and adults. The mother of two, she now writes and hosts Nick News for Nickelodeon.

The survey -- which polled 326 U.S. adults who had undergone cancer chemotherapy within the past five years -- was sponsored by the nonprofit National Coalition for Cancer Survivorship (NCCS) and drug maker Sanofi-Aventis, who together have created the Surviving With Confidence campaign to help patients gain a better understanding of cancer care.

Some of the survey's findings:

  • Around eight out of 10 cancer survivors said they had been fearful prior to starting chemotherapy, with most (76 percent) worried primarily about side effects such as hair loss, nausea and fatigue.
  • Looking back, almost two-thirds (62 percent) said those fears were unjustified. Just 14 percent described their side effects as "very difficult," and about a third (32 percent) had a "somewhat easy" or "very easy" experience with treatment.
  • Almost all (87 percent) of survivors said that new supportive care products made the side effects that they did experience much more manageable than they had expected.
  • Eighty-seven percent of survivors who had experienced side effects said that chemotherapy was worth going through, and 90 percent said the treatments had given them real hope for survival.

Anne Willis, 25, is NCCS' director of survivorship programs and a 10-year survivor of Ewing's sarcoma, a rare malignancy that attacks the bone or soft tissue. She told conference attendees that when she first knew she would be undergoing chemotherapy, she "was too scared to ask the nurses what to expect. I never had any conversations with anybody, so I was absolutely terrified."

But, like many of those polled in the survey, Willis said she soon realized that her fears of chemotherapy were exaggerated. Her attitudes toward her health-care team changed, too. "I became much more of an active participant in my care," Willis said. "I never hesitated if I had a problem. One time I had a full-body rash that did not make me very popular, and I immediately told my doctor about it. We treated it and took care of the problem."

Too often, patients remain mum about their fears and the side effects that they do experience. Ellerbee said she was lucky, because her training as a journalist had taught her to ask questions.

"If you are living with cancer, talk to your doctors and other health professionals about these issues," she advised. "If you've got fears, tell them. If you have questions, ask them. Side effects -- tell them. Ask what they can do to help you."

The NCCS strongly advises that patients also get written "Treatment Plans" from their health-care team before they begin chemotherapy -- a document that outlines the interventions they will receive; potential side effects; and ways to manage those side effects.

"I know personally that having that piece of paper would have encouraged me to open up that dialogue with my health-care team," Willis said.

Everyone agreed that, if anything, cancer care has gotten both easier and more effective in the decade or more since Willis and Ellerbee received their care.

"Things are dramatically different now in the 10 or 12 years since [Willis'] treatment, in terms of what we can do for patients to improve their care," said oncologist Dr. Howard Burris, who is chief medical officer and director of drug development at the Sarah Cannon Research Institute in Nashville, Tenn. "It's really made cancer care an outpatient business."

Ellerbee agreed. "Since my diagnosis, there have been many advances in cancer care, and more people survive every year because of new treatment options," she said. "In other words, it is more possible today to live life as you know it -- and to have that life as you know it go on -- while you are undergoing therapies that can potentially extend your life or save your life."

"It has been 16 years since I was diagnosed with cancer," Ellerbee added, "and every morning that I wake up on the right side of the grass, I am a grateful woman, because I did not let my fears keep me from getting the treatment that I needed."

More information

For more on living with and beyond cancer, visit the National Coalition for Cancer Survivorship.

Posted: April 2008


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