An ASTRO survey reveals that one in three adults
wished they had had more information about
cancer treatment side effects prior to treatment

One in three adults does not fully understand cancer treatment side effects

November 27, 2019
by John R. Fischer, Senior Reporter
One in three adults does not fully understand the extent of cancer treatment side effects, according to a survey conducted by the American Society for Radiation Oncology.

More than 400 U.S. adults discussed in the national review their experiences undergoing radiation therapy, chemotherapy and surgery, with approximately one-third experiencing side effects that they wished they had more information on prior to treatment. Roughly one in five felt they needed to know more about possible side effects before undergoing radiotherapy (18 percent); surgery (20 percent); and chemotherapy (26 percent).

"An unfortunate reality of cancer treatment is that therapy also has side effects that can impact a patient's quality of life. Nearly all patients in the survey felt confident about their treatment decisions, but a sizable number also expressed a clear need for more information about potential side effects," Dr. Reshma Jagsi, FASTRO, senior author of the study and the Newman Family Professor of Radiation Oncology at the University of Michigan, said in a statement.

The survey specifically focused on and compared experiences of radiation therapy-related side effects to those of other cancer treatments. Patients who reported severe side effects tended to not know enough about them, with more than a third saying they felt uninformed, compared to four percent who experienced minimal side effects.

Of the respondents, 37 percent reported wanting more information on side effects related to radiation therapy, particularly skin irritation, gastrointestinal symptoms and fatigue. Thirty-six percent said the same for chemotherapy, wishing they knew more about nerve damage, GI symptoms and fatigue side effects. Thirty-four percent who underwent surgery wished for more information on pain, nerve damage and numbness.

Those who underwent radiation therapy said their experiences were generally in line with their expectations, though 29 percent reported feeling more tired than expected. Twenty-eight percent felt weaker and 31 percent experienced worse changes to their energy levels than anticipated. The side effects most were concerned with prior to treatment were tiredness (56 percent), feeling weak (50 percent) and skin burning (46 percent). More than two-thirds (68 percent) expected their radiation oncologist to have the same or more cancer knowledge as the other oncologists on their treatment team.

Side effects rose in radiation therapy patients who received systemic/drug therapy and/or surgery. Those who received all three treatments were more likely to feel greater fatigue, weakness and pain than those treated with just radiation therapy. On a scale from zero to one hundred, the average ratings for severity were 45 for radiation therapy side effects, 47 for surgical, and 63 for chemotherapy.

Despite these experiences, nine in 10 patients overall felt they chose the best treatment, even though they desired more information about side effects. A majority (55 percent) consulted their primary care physicians on treatment options, with 64 percent of patients saying PCP opinions were very important and 29 percent saying they were somewhat important in their choice.

A fourth of all patients said they only consulted PCPs as information sources. Those who used additional information sources were most likely to seek advice from medical or cancer-related websites, family, friends, other cancer patients and cancer support groups.

"More in-depth patient counseling on these side effects could help us better prepare our patients for changes to their quality of life," said Dr. Narek Shaverdian, first author of the study and a radiation oncologist at Memorial Sloan Kettering Cancer Center, in a statement, adding that "the pronounced impact of treatment side effects for patients receiving combination therapy also suggests a need to build better coordination between oncology disciplines about managing side effects and to improve informed consent processes across cancer therapies.”

The findings were published in the Journal of Oncology Practice.