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Often facing greater disease-related risk, younger women with breast cancer are asked to weigh fertility, sexual health and body image issues within a short window of time â€“ in many cases, without as much guidance as they would like.
Making decisions about breast cancer treatment can be especially stressful for younger women. Often facing greater disease-related risk, these women are asked to weigh fertility, sexual health and body image issues within a short window of time — in many cases, without as much guidance as they would like.
A recent qualitative study sought to gain a better understanding of the information needs of this population and design an accessible, tailored intervention to address them. Results were reported by Clare Foster, a professor of psychosocial oncology and director of the Macmillan Survivorship Research Group at the University of Southampton in the United Kingdom; she presented the findings during the 2015 World Congress of Psycho-Oncology held July 30-August 1 in Washington, D.C.
Approximately 20 percent of women are diagnosed with breast cancer before menopause, noted Foster, and these women generally have a poorer prognosis, larger, higher-grade tumors, more lymph node involvement and a greater lifetime risk of local, contralateral and distant disease.
Yet some in this population feel that little information is geared specifically to people in their age group. Foster shared some specific participant comments, noting that one young woman said: “it’s like we don’t exist; everything is tailored to 50-year-old women and to the extremes, either the very young or the very old … it would be nice to fit some of us in the middle.”
For the study, women with a diagnosis of breast cancer aged 40 years or younger were enrolled from three U.K. hospitals and asked what information they would have liked to have had before choosing their cancer treatments. This was achieved through 20 in-depth, semi-structured interviews and two focus groups. The study involved 32 women whose average age at diagnosis was 34. Twenty-two percent of the women were single, 59 percent had children and 33 percent reported a family history of breast cancer.
Among all those enrolled, 37 percent had opted for breast-conserving surgery and 63 percent mastectomies; 75 percent of those who had undergone mastectomies had opted for reconstruction.
Identified as important by participants was more detailed information about the different types of breast cancer, cosmetic outcomes of surgery and reconstruction, and information about treatment effects on fertility and fertility preservation options.
“They also wanted to know a great deal about preparing before and after their surgery … they wanted to know more about the role of nutrition and exercise in preventing further cancers, and, especially, what are the implications for getting on with their everyday lives,” said Foster.
Participants found information particularly lacking in the areas of timing and options for reconstructive surgery (including a better understanding of implants), effects of treatment on fertility (including more details on what’s involved with, as well as the success rate of, fertility preservation) and issues around genetic predisposition/testing. Many participants also lamented the lack of time allowed to prepare for and choose among different treatment options in the context of their possible consequences.
“These are pretty significant implications that people are having to think about at the time of diagnosis, so preparation in the context of the need for some very rapid decisions is critical,” said Foster.
Armed with the information they collected, Foster and her team have developed a prototype web-based intervention; they are currently seeking funding to launch it and evaluate its effectiveness. They hope this decision aid will complement clinical consultations, help reduce women’s uncertainty and support joint decision making by outlining both risks and benefits of various treatments.
“There’s evidence,” noted Foster, “that web-based resources can be effective in supporting people in making decisions, reducing decisional conflict and enhancing satisfaction with the decisions people are facing.”
Foster’s research team is also developing and pilot-testing a web-based genetic testing decision aid for young women diagnosed with early-stage breast cancer.