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By Alice Park
January 24, 2017
TIME Health
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Breast-cancer treatments may be effective at treating many tumors, but they come with a price.

In the latest study on the side effects of these treatments, published in the journal Cancer, researchers led by Christopher Friese at the University of Michigan say that 42% of women who were treated for breast cancer reported severe side effects. These included nausea or vomiting, diarrhea, constipation, pain, swelling in the arms, shortness of breath, and skin irritation around the breasts during the seven months after diagnosis and following treatment with surgery, chemotherapy or radiation.

“As a physician, I don’t see the whole of it in terms of how patients are suffering,” says Dr. Allison Kurian, one of the study’s co-authors and associate professor of medicine at Stanford University. “I probably see only a tiny bit of it in the clinic. For me, to see that a significant number of women reported toxicity that was severe or very severe, was remarkable. It was higher than I might have thought and an important reminder to me as a clinician that these therapies are quite toxic, and we need to listen carefully to what patients may be telling us about them.”

Such information could be helpful for women making decisions about their treatment. But there is little data on how extensive these side effects really are among a large group of women from different ethnic and economic backgrounds. Some experts also say that side effects may not be discussed in as much detail as treatments are — not having the full scope of information about side effects could affect women’s decisions about which treatments they choose. And there is growing appreciation that such side effects may adversely affect women’s physical health in other ways, which can affect their recovery as well as whether or not they finish their treatments. In the study, women reporting the most problems with their treatments also reported the lowest scores on overall physical functioning including fatigue, sleep problems, pain, breathing difficulty and more.

About 29% of women receiving chemotherapy reported severe side effects. Those opting for to have both breasts removed also reported the highest amount of severe pain — 37% — compared with 25% of women who removed one breast and 18% of women choosing lumpectomy.

This information could help women decide between mastectomy and lumpectomy, for example, since more data suggests that double mastectomies to prevent spread of the cancer to the unaffected breast may not be associated with better survival. “So for many to see that double mastectomy is associated with more severe pain, perhaps they may choose something different,” says Kurian. “Having this kind of information at the time of decisionmaking is important.”

A breast-cancer diagnosis is a stressful and emotional experience, however, and making sure that treatment and side effect information is presented and considered objectively is a challenge. Many women feel as if they have to act quickly, having been trained to think that treating cancer as soon and as aggressively as possible is ideal. But even invasive cancers, such as the type the women in the study had, don’t need to be treated within days of a diagnosis, says Kurian. Most doctors give their patients a few weeks to a month to decide on their treatment, which may still seem too soon for some.

Making sure that the information is communicated in the right way is also important, says Kurian. In the study, she found that Latina women were 30% more likely to report severe side effects than white women, which may reflect language barriers or cultural barriers to understanding some of the possible negative consequences of treatment. “It’s a sign that we really need to develop customized interventions for women to assess and manage toxicity as soon as they occur,” she says. “As well as find a way to communicate the information about side effects initially to help them make informed choices about their treatment.”

“We need to continue to think carefully about the balance between benefit and risk, and make sure these are conveyed clearly to the patient to help her make the best decision for her treatment,” says Kurian.

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