When a woman is diagnosed with breast cancer, she may have many questions about her immediate future: the stage of the disease, the treatment she will receive, where it will happen.

In the longer term, however, the questions become much harder to answer: will I feel accepted my body? Will I be sexually confident? Will I feel a lot of pain?

These are questions Sarah Tevis, MD, member of the University of Colorado Cancer Center, assistant professor of surgical oncology, aims to help women diagnosed with breast cancer answer. Since 2019, she and her multidisciplinary co-researchers have interviewed women diagnosed with breast cancer to better understand the quality of life outcomes.

In a study published this month in the Annals of Surgical Oncology, his team presents data collected from results reported at 3 and 6 months in patients having undergone lumpectomy and mastectomy.

A major goal of the research, says Tevis, is to develop decision-making tools to help women newly diagnosed with breast cancer understand what they might experience in the long term after diagnosis.

“We’re hoping to put together a lot of patient data to get a feel for what the average patient experiences three months, six months, a year after treatment,” says Tevis. “It gives us a database so we can tell patients, ‘This is what other people in situations similar to yours have been through.’

“We were very good at telling patients what to expect in the short term, maybe the first month after surgery, but beyond that we weren’t able to give them any good data-driven insight, what they might feel a year after surgery or even longer in the long term.

Ask patients to consider areas of well-being

Tevis and his co-investigators began their research by asking patients diagnosed with breast cancer to complete the BREAST-Q survey, a validated survey tool measuring quality of life outcomes. The survey asks women who have had or are currently undergoing treatment for breast cancer to quantify their experiences in areas such as psychosocial well-being, physical well-being and sexual well-being, among others.

For example, participants were asked to rank, on a scale of one to five, how often during the previous week they felt confident in a social setting, of equal value to other women and attractive. They also rated their satisfaction with the information they received from their health care providers.

Data were compared between patients who underwent lumpectomy and mastectomy at baseline preoperatively, and at three and six months postoperatively. Overall, according to Tevis, patients who had a lumpectomy reported greater breast satisfaction, psychosocial well-being, and sexual well-being over time than those who had a mastectomy, although both groups reported a decline in short-term physical well-being.

One of the important findings is that even before the operation, sexual health was the lowest among the areas of well-being in which the women were surveyed, Tevis says. She and her co-researchers followed these findings by asking 80 women to complete a survey on sexual health symptoms.

“We felt that if women already start with low scores in this area, the treatment will only make matters worse,” she says. These findings led to a partnership with Catch it in Time, an arts-focused nonprofit dedicated to the early detection of cancer. The goal of this collaboration is to create a series of videos, currently in development, featuring women who have undergone treatment for breast cancer discussing their sexual health experiences during and after treatment. The videos will also feature providers and experts in the field who will offer mitigation strategies and resources for women with symptoms.

“We want to normalize the symptoms that women have, so I think having patients in the videos is going to have a really big impact,” says Tevis. “They share their experiences and come up with suggestions of things women can try if they have certain symptoms, giving them an idea of ​​when they should ask for more support and more resources.”

Tevis says she was initially concerned that many women would be reluctant to complete a sexual health survey or participate in focus groups, “but a lot of women said they wanted to know more about it, and they were happy to participate because they wanted the information and to help other patients.

Provide more supportive services to patients

The data collected from the results reported by patients at baseline, three and six months is an important step in an ongoing research process to create more specific, long-term decision aids for people diagnosed with cancer. breast, explains Tevis. A next step is to bring the outcome data back to one year, as well as gathering enough data so that the patient averages can more accurately represent an individual’s demographics.

“I think the development of this decision aid has the potential to help patients make very informed decisions and get a better idea of ​​what to expect in the short and long term after treatment. “said Tevis. “We want to help them better understand how they might feel after surgery and have the resources they need.

“By continuing this research and these projects, we are striving to provide more support services to patients. We’re in the early stages of developing a decision support tool, but with this data we can look at all of these different areas and determine where we can provide support services.