Hundreds of thousands of people living with metastatic breast cancer worldwide deserve the opportunity to understand their disease and treatment choices and face their diagnosis knowledgeably. ACCC’s partner organization, the Metastatic Breast Cancer Alliance, has pulled together tools from their networked members below. ACCC will be including updates on this initiative in the coming months. Take time to explore existing tools and learn more about what’s in the works.
Tools & Resources
- Preparing for Your Doctor’s Visit MBC Worksheet
- Frankly Speaking About Cancer Series: the Cancer Support Community’s education series that provides trusted information on a variety of topics important to people affected by metastatic breast cancer
- Metastatic Breast Cancer Booklet
- Metastatic Breast Cancer Worksheet. This tool helps patients make the most of their time with their healthcare team.
- Improving Patient-Provider Communication and Shared Decision Making.
- Metastatic Breast Cancer: Resources & Support
- Guides in the Metastatic Breast Cancer Series includes guides for the Newly Diagnosed, Managing Stress and Anxiety, Palliative Care, Financial Concerns, and Clinical Trials (online and printed copies available). Guide for the Newly Diagnosed is available in English: Spanish, Chinese, Vietnamese, Tagalog and French.
- Insights on Metastatic Breast Cancer – quarterly newsletter
- Young with Stage IV: Your Patients’ Unique Needs Audio PPT
- Let’s Talk About It Video Series (For HCPs and their Patients):
- Tired of It: Young Women, Metastatic Breast Cancer and Fatigue
- A New Reality: Young Women Discuss Living With Metastatic Breast
- Young Women’s Initiative (YWI) presents Love, Sex and Relationships: Body Acceptance After Diagnosis
- Coping With Other People’s Reactions to Metastatic Breast Cancer
- Been There, Done That: Advice From Other Young Women
- Hard Conversations as a Young Woman With Metastatic Breast Cancer
- Metastatic Breast Cancer 360: Conversations and Questions About Treatment and Quality of Life
Breast Cancer Helpline: (888) 753-LBBC
- Patients can talk by phone with a trained volunteer who has been diagnosed with breast cancer. They can provide them with emotional support, share practical information and give comfort. All calls are completely confidential. Women and men diagnosed with breast cancer and their caregivers are invited and encouraged to use the Helpline. Hours: Monday – Friday from 9:00 AM to 9:00 PM. (ET). At all other times, leave a message and your call will be returned within 24 hours or and often much sooner.
Metastatic Trial Search is a clinical trial matching service designed specifically for patients with metastatic breast cancer. Developed by BreastCancerTrials.org in collaboration with five breast cancer advocacy organizations. Providers can use Metastatic Trial Search to find trials for patients or refer patients to use it on their own.
The Metastatic Breast Cancer Alliance is currently working on The Dandelion Project – a first-of-its-kind approach to information for patients with metastatic breast cancer and their families by designing a set of unique visual tools that will help address the existing communications challenges, increase patient engagement, and facilitate alignment of patient and healthcare team goals. Led by patients’ and healthcare teams’ insights and harnessing design expertise, the project is currently in pilot test phase investigating visuals as the means to redesign the conversation around metastatic breast cancer.