In this post I offer some reputable, reliable sources of information and give pointers for when you are browsing these websites.
By Kate Dilligan | 01/10/2020
Here’s a list of my top (in no particular order) resources for breast cancer patients. In this post I offer some reputable, reliable sources of information and give pointers for when you are browsing these websites. This list is non-exhaustive: these organizations are a great place to start.
“NBCF was founded to fill in the gaps of cancer care, ensuring every woman has the access and information she needs to get through every step of her breast cancer journey. Over the last decade, NBCF has provided over 192,000 mammograms, over 858,000 patient navigation services, and over 240,000 breast health education services to women in need.”
Thoughts: The National Breast Cancer Foundation’s main focus is to equip women with the knowledge to detect breast cancer and be the best self-advocate they can be. These two points of emphasis, along with making early screening accessible, help save lives. This resource is extremely thorough and covers breast anatomy to early detection to debunking myths. Two amazing programs within the NBCF are the National Mammography Program and the Patient Navigation Program. The National Mammography Program provides financial aid to those who are in need of screening services. The Patient Navigation Program aims to “provide patient navigation services to help women navigate the complex cancer care system.”
“In 1980, Nancy G. Brinker promised her dying sister, Susan, that she would do everything in her power to end breast cancer forever. In 1982, that promise became the Susan G. Komen® organization and the beginning of a global movement. What was started with $200 and a shoebox full of potential donor names has now grown into the world’s largest nonprofit source of funding for the fight against breast cancer. To date, we’ve invested more than $2.9 billion in groundbreaking research, community health outreach, advocacy and programs in more than 60 countries. Our efforts helped reduce deaths from breast cancer by 40 percent between 1989-2016 and we won’t stop until our promise is fulfilled.”
Thoughts: The Susan G. Komen for the Cure organization primarily focuses on fundraising in order to drive breakthrough research and support those affected by breast cancer. The impact of the Susan G. Komen for the Cure organization has been immense, with over a billion dollars donated to research breast cancer over the last couple of decades and tens of thousands of enlisted advocates. The organization provides a breast care helpline that is available Monday through Friday from 9am to 10pm EST, and can be accessed by calling +1 877 GO KOMEN or emailing [email protected].
“Our mission is to help people make sense of the complex medical and personal information about breast health and breast cancer, so they can make the best decisions for their lives. We want to ensure that people have access to expert guidance on the multilayered and vast amount of breast cancer information, treatment, and research available. Breastcancer.org is committed to being a trusted resource for both patients and caregivers because we believe that everyone should have the greatest care possible for their unique needs.”
Thoughts: Breastcancer.org, as it states in its mission statement, is very much a “trusted resource for both patients and caregivers.” It is a comprehensive resource for patients, as it provides information about both symptoms/diagnoses and day-to-day steps patients can take to manage their treatment. For caregivers it provides a great collection of the latest clinical research and podcasts of patients giving their experience. I recommend reading Breastcancer.org’s special report on COVID-19’s Impact on Breast Cancer Care. The report covers an array of topics ranging from how COVID-19 has affected breast cancer care to the unique risks that COVID-19 pose to patients with breast cancer to how you can stay vigilant about your health.
“Our mission is to end breast cancer through the power of action and advocacy. Founded in 1991, the National Breast Cancer Coalition (NBCC) is a collaboration of activists, survivors, researchers, policy-makers, grassroots groups and national organizations that have come together as disruptive innovators for social change. We link hundreds of organizations and tens of thousands of individuals from across the country into a dynamic, diverse coalition that gives breast cancer a meaningful voice in Washington, D.C., and state capitals; in laboratories and health care institutions; and in local communities everywhere.”
Thoughts: The National Breast Cancer Coalition (NBCC) combines academic understanding of breast cancer with action in order to form a multifaceted approach to help patients. The Information Center of the NBCC is similar to the National Breast Cancer Foundation’s resource page. Both debunk myths, provide facts and figures about breast cancer, and list policies to be aware about. The Action Center lists ways that you can help, such as joining the National Action Network or becoming a member of the NBCC.
“We are nationally recognized for our high quality programs and services. We call on many volunteers, including the nation’s foremost healthcare professionals, to provide their wisdom and experiences to help you with medical, emotional and practical concerns. Because of these volunteers and the support of our donors, all our services can be offered for free.”
Thoughts: Living Beyond Breast Cancer (LBBC) focuses primarily on educating those who visit their website about breast cancer and present resources. I highly recommend using the LBBC’s “I am…” feature. The “I am…” feature allows you to explore certain articles based on your experience. For example, if you are a young woman affected by breast cancer, go to the “I am…” feature and select “A young woman.” The LBBC will then refer to you to many different articles and resources specifically catered to you, such as the Young Women’s Initiative or how to think about your emotional concerns.
Let us know your go-to websites for accurate and helpful information about breast cancer in the comments!