Improved dialogue focused on basic disease information is needed between patients with metastatic breast cancer and their caregivers and oncologists, according to survey results released at the 37th Annual San Antonio Breast Cancer Symposium in Texas.
The investigators said that improved dialogue can clarify patient/caregiver expectations about disease management and also dispel false beliefs that the principles guiding adjuvant treatment apply similarly to metastatic treatment.
Musa Mayer, a breast cancer survivor and advocate with AdvancedBC.org in New York City, presented results of the “Make your dialogue count” survey, which was conducted from June 2014 through August 2014.
The survey was developed for adult women with metastatic breast cancer (≥21 years of age), adult caregivers of women (≥21 years of age) with metastatic breast cancer who attend at least half the clinics visits of their loved ones, and medical oncologists who treat ≥5 women with metastatic breast cancer per month.
Results were available in 359 patients, 234 caregivers and 252 oncologists.
The survey found that most patients (83%) and caregivers (76%) indicated that they were extremely or very involved in making treatment decisions. However, some lacked basic disease knowledge about the biomarkers expressed by the cancer, which could undermine informed decision-making. Specifically, 20% of patients and 29% of caregivers did not know the HER2 status. Also, 16% of patients and 30% of caregivers did not know the HR status.
Results also revealed that 28% of patients and 32% of caregivers indicated that their oncologists had told them or their loved ones that one goal of treatment for metastatic breast cancer was to provide a possible cure, and 27% of oncologists indicated that, in certain situations, they do not discuss with patients the fact that metastatic breast cancer is incurable.
Importantly, the survey identified gaps between important discussion topics and actual discussions between patients, caregivers and oncologists. In particular, patients and caregivers want greater discussion about long-term treatment plans and goals, complementary or integrated treatment options, and referrals to support services than actually occurred.
In addition, most patients (96%) noted that they were committed to using proactive methods, when available, to manage side effects in order to remain on a drug that is working. Most patients (73%) want more information on how to prevent or minimize side effects, yet 43% do not always open discuss side effects with their oncologists.
When statistics become available, they are expected to show that about 232,670 cases of breast cancer were diagnosed in women in the US in 2014, Mayer noted.
At the time of diagnosis, 5% of cases typically involve cancer that has metastasized to a distant site. Roughly 20-30% of patients diagnosed with early-stage breast cancer will develop metastatic disease.
The survey was sponsored by Novartis.
Jill Stein is a Paris-based freelance medical writer.