By Jackie Manthorne, President & CEO, CCSN
In January 2008, the Global Metastatic Breast Cancer Advocacy Working Group, composed of patient advocates from seven countries, met in New York to discuss potential solutions to meet the unmet needs of women with metastatic breast cancer. I was fortunate to have been one of three Canadian representatives at that meeting.
There are an estimated 4.4 million women living with breast cancer worldwide; in addition, breast cancer is the leading cause of cancer death among women globally. In developed countries, approximately 30 percent of women with earlier stages of breast cancer will eventually develop metastatic disease.[i] In developing countries, the majority of women with breast cancer are diagnosed with advanced stage disease.[ii] However, the exact proportion of those living with metastatic breast cancer is unknown as these data are not collected.
Women are living with metastatic breast cancer for longer periods of time. They have unique unmet needs that differ from those in the broader breast cancer community, yet there are few resources specifically dedicated to their needs. Those that do exist remain widely scattered, disorganized, and difficult to locate and access.
Given the need for additional treatment options for patients living with metastatic breast cancer, clinical trial information and services are critical but largely underutilized. Further, women with metastatic breast cancer who are eager to participate in clinical trials may face enrollment barriers due to restrictive design protocols.
While a majority of cancer patients report being receptive to enrollment, accrual to breast cancer clinical trials remains low.[iii] There are likely many reasons for this, although some of the major barriers to clinical trial enrollment include negative misconceptions, lack of access to appropriate information and difficulty in understanding clinical trial materials. An additional barrier is that clinical trials often exclude previously treated patients or certain metastases.
The Metastatic Breast Cancer Advocacy Working Group therefore prioritized three areas for immediate action:
- Improving access to information, resources and support for women living with metastatic breast cancer.
- Raising awareness of the needs of women with metastatic cancer, including creating and global platforms that speak to their unmet needs.
- Promoting an understanding of, access to and increased enrollment in clinical trials.
Ways to Improve access to information, resources and support for women living with metastatic breast cancer
- Increase collaboration and information sharing of resources for women with metastatic breast cancer to provide greater access to appropriate information.
- Offer online and in-person support services that are specific to differing groups of women with metastatic breast cancer, for example younger and elderly women, minorities, and those with specific metastases.
- Create an infrastructure for healthcare professionals to provide accurate clinical information and psychological support from the point of diagnosis onwards and throughout the duration of the illness, including encouraging healthcare institutions to institute metastatic breast cancer patient navigator programs and educating women completing treatment for primary breast cancer about the signs and symptoms of metastatic breast cancer.
- Solicit registries, government, academia and industry to collect data on the incidence of metastatic breast cancer and survival rates to better understand how many women are living with metastatic breast cancer and to investigate changes in prognosis in this patient group, especially following recent advances in breast cancer treatment.
Ways to raise awareness of the needs of women with metastatic cancer, including creating and global platforms that speak to their unmet needs
- Work globally with other organizations and governments of sovereign states to designate October 13 as Metastatic Breast Cancer Awareness Day to raise awareness of metastatic breast cancer among the larger breast cancer and cancer community, politicians and other decision makers and the public about the need for increased attention and resources for women with metastatic breast cancer.
- Work with women with metastatic breast cancer to speak out in their communities and share their personal experiences to raise the profile of metastatic breast cancer patients and their unmet needs. This should include shifting the dialogue to be more positive about metastatic breast cancer by referring to it as a chronic illness that can be managed in some cases.
Ways to promote an understanding of, access to and increased enrollment in clinical trials
- Encourage healthcare providers to communicate the option of clinical trials at time of first diagnosis, when most women with metastatic breast cancer actively seek information, and ensure that women have the help they need so that they can make an informed choice about whether to enroll in a clinical trial.
- Develop materials that will help women better understand the terminology associated with clinical trials. For example, extend access to clinical trial glossary of terms and frequently asked questions and answers. Trial sponsors should create easy-to-read clinical trial cards that clearly communicate quality of life endpoints and trial locations.
- Provide one-on-one support for women throughout the enrollment process, including help with informed consent documents and follow-up correspondence. Implement support systems for patients enrolled in clinical trials, including trial support groups and check-in calls from nurses and/or social workers.
- Increase communication about compassionate use/expanded access programs to women who are not eligible for a metastatic breast cancer clinical trial.
- Design clinical trials that include underserved populations of the metastatic breast cancer community, including heavily pre- treated women and women with certain metastases.
As an increasing number of women live with metastatic breast cancer for longer periods of time, many more people are in need of support and information on metastatic breast cancer. Unique information and support services are critical and patient advocates need to strategically address the development and positioning of future initiatives.
If you have metastatic breast cancer, are a caregiver of someone living with metastatic breast cancer or are interested in working with the Canadian Cancer Survivor Network in raising awareness of the unique issues facing those living with advanced breast cancer, please get in touch with us at email@example.com.
[i] O’Shaughnessy J. “Extending Survival With Chemotherapy in Metastatic Breast Cancer.” The Oncologist, 10(2005): 20-29.
[ii] Anderson B, et al. “Breast Cancer in Limited-Resource Countries: Health Care Systems and Public Policy.” The Breast Journal, 12(2006): 54-69.
[iii] Simon M, et al. “Factors Associated With Breast Cancer Clinical Trials Participation and Enrollment at a Large Academic Medical Center.” Journal of Clinical Oncology, 22(2004):2046-2052.