After DCIS, Some Women Face Lower Quality of Life

A study published recently in the Journal of Clinical Oncology reported on the long-term quality of life for women who have had ductal carcinoma in situ (DCIS), a noninvasive form of breast cancer. This study found that within 2 years of diagnosis, most of those who have had DCIS enjoyed a quality of life similar to that of peers who had no cancer. But it also showed a trend to worse mental well-being in younger women shortly after diagnosis and all women 10 or more years after diagnosis. Researchers suggested these findings should be considered in how we support women who have had DCIS going forward. They also recommended doing more research on DCIS, especially in women of different ages and ethnicities.

Background & Goals

DCIS is stage 0, or noninvasive breast cancer, meaning it is limited to the area where it first grew. The cancer is located in the ducts of the breast, the tubes that carry milk to the nipples. It can develop into invasive cancer or raise the risk of future invasive cancer if not treated. Common treatments are lumpectomy with radiation or mastectomy. It sometimes requires hormonal therapy.

About 20 percent of breast cancer diagnoses in the US are DCIS, according to the researchers. But there are few studies on the long-term quality of life for women who have had this stage of the disease. Some show worse well-being for women shortly after diagnosis that recovers as more time passes, but data have been inconsistent and the impact of the disease on women’s lives has not been explored past the first 5 years after diagnosis.

Researchers in this study had the goal of measuring quality of life for women who have had DCIS for a period of over 10 years after diagnosis. Quality of life refers to a how a woman feels about herself and her well-being and how her physical health may impact her day-to-day activities. They also looked at how it may affect women differently depending on their experience of the disease.

Design

The study looked at over 1,000 women from the Wisconsin In-Situ Cohort, a group of women diagnosed with DCIS who were recruited between 1997 and 2006 for a series of studies. In this one, they were called for a baseline interview about 1.3 years after diagnosis, and then contacted for follow-ups with at least 2 years between interviews.

Researchers collected information from each woman to see how DCIS affected her quality of life and if quality of life within the study group was different in relation to:

• Her age at diagnosis
• How long before the interview she was diagnosed
• How the DCIS was treated

There were a total of four follow-ups after the first baseline interview but, due to the timing of people joining the study, many women did not participate in all five rounds.

Quality of life was measured using the Medical Outcomes Study Short Form 36, a survey tool that provides separate scores on a person’s mental and physical quality of life. Participants were asked how their health affected their ability to perform activities such as carrying groceries or participating in sports. They were also asked questions on how they felt about their health, if they expected to feel worse in the future and if they felt depressed. Higher scores reflect a better quality of life.

A control group was pulled from lists of people with Wisconsin driver’s licenses.  They were selected at random within different age groups to get an age distribution similar to that of the study group.

Results

Scores from the study group were mostly similar to those from the control group with two exceptions that were statistically significant.

• Mental quality of life for women more than 10 years after diagnosis was worse than the control group’s, as well as their own scores in earlier interviews.
• Younger women scored worse in the first 5 years after diagnosis than women over 50.

Physical quality of life was similar across all ages and lengths of time since diagnosis in both groups. It was noted that baseline interviews were typically held a year after diagnosis when the immediate pain and physical limitations following surgery would have already passed.

The study found that type of treatment, including hormonal therapy, didn’t impact scores.

What This Means for You

It is important to take care of your emotional health even after treatment for DCIS has ended. If you are younger than 50 you may be concerned about changes in how you see your body, your sex life and plans for family.

You may, like many women, enjoy a return to the quality of life enjoyed by others who have never had cancer, but this study finds that years after treatment there can be lingering effects on your emotional well-being. Researchers suggest further study in this area but you should continue to pay attention to your feelings and find support as you go forward. Your treatment center may offer oncology social workers, talk therapists or counselors you can meet to talk with about your emotions, coping strategies and stress. Or, you might find comfort in talking with someone in your community, social group or through resources like LBBC’s Breast Cancer Helpline.

Hart, V, Sprague, BL, et al. Trends in Health-Related Quality of Life After a Diagnosis of Ductal Carcinoma In Situ. J Clin Oncol. Published online before print February 16, 2016, doi:10.1200/JCO.2015.62.7281