Have you been diagnosed with metastatic breast cancer (MBC) after previous early-stage or advanced primary breast cancer (BC)? If so, research suggests that distant metastases continue to acquire changes, called mutations, not seen in the original primary tumor.
Cancer cells appear when mutations drive cells to grow, proliferate, and behave differently than normal cells. As the cancer cells multiply and form a tumor, they continue to mutate, creating new BC cell types. Although every cancer cell is related to the same initial parent cell, different cell types comprise one cancer, known as tumor heterogeneity.
Due to such tumor heterogeneity, every BC is different, and primary and metastatic BCs also differ from one another. That’s why MBC patients may undergo treatment that differs somewhat or greatly from their original BC. Fortunately, many researchers recognize that MBC and primary BC are different diseases. Furthermore, MBC clinical trials are ongoing to characterize mechanisms that lead to treatment resistance and new pathways that could become new therapeutic targets.
What Does This Mean for Metastatic Breast Cancer Patients?
Due to such developments, it’s now even more crucial for MBC patients to consider participating in clinical trials. There’s an increasing number of innovative, adaptive clinical trial designs. Such studies assign patients to treatment arms with novel therapeutic agents that target specific mutation types. Therefore, be sure to consider clinical trials as an option when making treatment decisions with your healthcare team. Clinical trials study new treatment approaches and help determine whether a novel therapy is safe and potentially, more effective than the current standard of care.
If you’ve been diagnosed with MBC, speak with your oncologist and other healthcare team members about having genetic analyses conducted on your recurrent cancer and compared to your primary tumor. Such information may play a critical role in determining your optimal treatment going forward and your potential participation in metastatic breast cancer trials.
It’s important to find organizations that will link you with appropriate trials for your MBC’s specific subtype and/or molecular make-up and provide you with invaluable support and resources to meet your particular needs.
Living with Metastatic Breast Cancer
Most people diagnosed with MBC will tell you that their experiences differ greatly from those with primary BC. Many feel excluded from and have come to dread the “celebration” of Breast Cancer Awareness Month every October and the sea of pink that appears everywhere. Some strongly dislike the term “cancer survivor” because there technically is not yet a cure for MBC.
However, with optimal care, a strong support network, and dedication to being an active member of their own healthcare teams, more people with MBC are living longer with better quality of life than ever before.
As an MBC patient, you have unique needs and may wish that you could reach out to other MBC patients to share your thoughts, concerns, experiences, and challenges. In other words, you may want to connect with others who “get it.”
Fortunately, many top-notch MBC and BC online communities can help you create a robust, personalized support network focused on living well with MBC. In addition, they’ll provide:
- Assistance with locating MBC-focused supportive groups for every MBC subtype
- Help in facing the unique challenges of your specific MBC subtype
- Evidence-based medical information and breaking news on MBC
- Information to help you partner with all members of your treatment team, becoming an informed advocate for your own care
- Multiple robust resources, including MBC subtype-specific online clinical trial search tools, searches for innovative trials based on biomarkers and genetic alterations, and more
Locating Metastatic Breast Cancer Trials
Here is a listing of organizations that can provide various benefits to you:
- When you visit the Facing MBC Together website, you immediately see the following powerful words: “No matter how you feel, you don’t have to feel alone.” This organization provides invaluable resources on creating a support system, building a community, coping with MBC, treatment and clinical trial participation, a listing of supportive hotlines, and links to multiple MBC and BC support organizations.
- The MBCAlliance’s motto is, “together we are stronger than the disease.” In addition to providing a wealth of information and supportive resources, the MBCAlliance offers “Metastatic Trial Talk,” a portal with news and features regarding MBC research, and “MBC Connect 2.0,” a patient experience registry that enables MBC patients to record their stories and easily share them with their healthcare teams. The latter also now provides potential MBC trial matches.
- TriageCancer is a clinical trial matching service that searches the full national database of cancer treatment trials for your specific cancer diagnosis, stage, subtype, and treatment history.
- Living Beyond Breast Cancer is a national nonprofit organization that “seeks to create a world that understands there is more than one way to have breast cancer.” It offers a wealth of practical, emotional, and evidence-based content for all BC patients, including those who are newly diagnosed, undergoing treatment, post-treatment, and living with MBC. It also provides a link to BreastCancer.org’s Metastatic Breast Cancer Trial Search tool.
- Cancer.net is a robust resource that provides “Doctor-Approved Patient Information from ASCO® ” (the American Society of Clinical Oncology). On its “Finding a Clinical Trial” page, it includes in-depth information on clinical trials and links to multiple free clinical trial search tools.
How Ciitizen Can Help Metastatic Breast Cancer Patients
When searching for appropriate metastatic breast cancer trials, it’s crucial to have all your medical records in hand. Such information should include your MBC’s subtype, stage, grade, pathology, biomarkers, and genetic make-up. This is the only way that your oncologist and clinical trial investigators can accurately assess whether you fulfill key inclusion criteria.
Although the thought of gathering all your records can be intimidating, remember that you’re not alone. Ciitizen is a free clinical trial matching service for patients with metastatic or advanced BC. It gathers all your medical record information for you and helps accurately match you to clinical trials for your specific BC based on your comprehensive medical treatment history.
Ciitizen is a free service that helps patients get more out of their health records. Our platform enables patients to find better treatment options and gives them the opportunity to advance the research for cures.
Ready to get your medical records in order? Get started today!