Some women who are diagnosed with breast cancer are able to choose between different types of surgery to remove their tumors. Because these surgical options are equally effective, the decision often comes down to the woman’s preference about factors such as recovery time, potential complications, and effect on appearance.

But a new study shows that some women also take another factor into consideration: cost. The cost of care is particularly important for women with lower incomes, the study found. However, the researchers found that very few women reported discussing costs with their medical team, despite their desire to do so.

“Doctors discuss many variables with women facing preference-sensitive breast cancer treatment decisions, yet the potential for financial harm is not routinely discussed,” said lead investigator Rachel Greenup, M.D., a surgeon at Duke Cancer Institute.

Many studies have established that financial toxicities—difficulties that result from the burden of medical costs—are a real problem for people with cancer. “Now it is time to identify opportunities for interventions that protect patients receiving costly care,” Dr. Greenup added.

For some women in the study, the cost of care was higher than they expected, and a few reported that the unexpected financial burden interfered with subsequent medical care. Findings from the NIH-funded study were published online July 29 in the Journal of Oncology Practice.

“Providing patients with information about the cost of their care allows them to make informed treatment decisions, and also to proactively pursue strategies that might decrease their level of financial hardship,” said Janet de Moor, Ph.D., M.P.H., deputy associate director of NCI’s Healthcare Delivery Research Program.

Considering Costs of Care

To recruit study participants, the researchers partnered with Dr. Susan Love Research Foundation’s Army of Women, a coalition of volunteers that promotes participation in breast cancer research, and the Sisters Network of North Carolina, an advocacy organization focused on breast cancer in the African American community.

Members of these organizations were emailed information about the study, and those who agreed to participate received an online survey about how they factored cost into their treatment decisions and how these decisions subsequently influenced their care.

Just over 600 participants who had undergone surgery for stage 0 to stage 3 breast cancer were included in the final analysis. Their median age was 50 years, and the majority had early-stage breast cancer. Most of the women were white (90%), had private insurance coverage (70%) or Medicare (25%), and were college educated (78%). About half reported household incomes of more than $74,000.

Overall, 43% of participants had breast-conserving surgery (also called a lumpectomy), 25% had a mastectomy, and 32% had a double, or bilateral, mastectomy. Thirty-six percent of participants also underwent breast reconstruction.

While the participants reported that fear of cancer recurrence and advice from their medical team were the most influential factors for decisions about which type of surgery to have, 28% said they also considered costs. Cost was a more important factor for women with a lower annual household income than those with a higher income.

In fact, women with the lowest household incomes ($45,000 per year or less) reported that their surgical choice was influenced more by cost than by the physical effects of different types of surgery, such as loss of breast sensation and a change in breast appearance. That is significant, Dr. Greenup said, because surgeons “spend a lot of time talking to women about breast preservation and appearance, but we rarely talk about money.”

Indeed, less than a quarter of participants (22%) reported discussing costs of care with their medical team.

“These conversations are not happening routinely, yet patients want information about treatment costs,” said Dr. de Moor, who was not involved in the study.

Financial Toxicity from Cancer Care

Dr. Greenup and her colleagues also investigated how the costs of breast cancer care affected the participants’ lives.

One-third of the participants reported that the costs of their breast cancer care turned out to be higher than they expected. Although most said that paying for their cancer treatment did not interfere with their other medical care, a quarter of the women with the lowest incomes reported avoiding doctors and medical tests.

Some women reported depleting their savings or borrowing from friends and family to pay for their breast cancer treatment, and one-third of the women with the lowest incomes said they had difficulty affording basic necessities as a result.

Such financial toxicity was highest among women who had a double mastectomy—the most intensive surgery choice. “There may be some financial implications of choosing more intensive treatment, without any benefit in cancer outcomes,” Dr. Greenup explained.

That’s important because rates of double mastectomy have increased over the past few decades despite it “not being medically necessary for the overwhelming majority of breast cancer patients,” she added.

The researchers noted a few limitations of their study. For instance, the study group’s annual income, education level, and level of insurance coverage were higher than national averages.

Because of this, “it’s likely that this study is underestimating the magnitude of the problem,” Dr. de Moor said.

Encouraging Discussions of Cost

The bottom line is that women with breast cancer want to know about cost information up front, said Dr. Greenup—even women with higher incomes and adequate insurance coverage.

The message for doctors, then, is that they “should not be hesitant to address the financial implications of cancer treatment, and patients may welcome cost discussions,” she said.

But there are several practical barriers, Dr. de Moor pointed out, such as doctors not being trained to have such conversations and the difficulty of estimating out-of-pocket costs for individual patients.

“That’s not to say that costs should just be ignored or that there aren’t other members of the team who could make sure that information is provided,” she said.

Some cancer centers have “financial navigators” who help patients with the financial aspects of cancer care, for example. But more needs to be done to “identify and address patients’ cost concerns in a systematic and well-coordinated way,” Dr. de Moor added.

More research is ultimately needed to understand the best ways to communicate cost information and how cost transparency influences patient’s behaviors. But in the meantime, said Dr. de Moor, many leading cancer organizations agree that information about treatment costs should be provided to patients.

This post was originally published by the National Cancer Institute. It is republished with permission.