Newly Diagnosed with MBC: Keeping Your Balance on the Emotional Rollercoaster
Hearing the words “you have metastatic breast cancer” is devastating. Whether your diagnosis comes de novo or months, years, or even decades after treatment for early-stage breast cancer, there is no way to prepare for the terror, anger, despair, and sense of freefall that follows. It’s no wonder that the phrase “emotional rollercoaster” comes up so often when MBC patients describe the experience.
OMBCL co-hosts Nancy Roylance and Ashley Fernandez sat down with oncology social worker Lisa Nelson to get her take on the emotional and mental health challenges of processing the diagnosis—and how working with an oncology social worker can help. Lisa also shared some of the other resources and strategies that patients can use to keep their balance.
Next, we joined a group of newly diagnosed patients for a free-ranging and frank discussion of what it’s like to be diagnosed MBC. These courageous and generous women share both the struggles and challenges of their new reality, and how they are finding support, balance, and even hope.
Many thanks to Michelle Anderson-Benjamin for sharing her extensive list of resources with us.
Organizations
CancerCare: Professional oncology social workers provide free emotional and practical support for people with cancer, caregivers, loved ones and the bereaved.
Living Beyond Breast Cancer: National nonprofit that connects people with trusted information and a community of support.
Tigerlily Foundation: One of the premier global organizations providing education, awareness, advocacy, empowerment and transformational programs to girls
Metavivor: Non-profit organization dedicated to increasing awareness of advanced breast cancer and equity in research and patient support.
MBC Alliance: Works collaboratively to transform and improve the lives of people living with metastatic breast cancer.
For the Breast of Us: Online breast cancer community for women of color. Our mission is to uplift women of color affected by breast cancer by sharing stories
The Breasties: Supports and improves the experiences of the breast and gynecologic cancer community through peer-to-peer connection, resources, and advocacy.
TOUCH, The Black Breast Cancer Alliance is are on a mission to eradicate Black Breast Cancer! Drives the collaborative efforts of patients, survivors
Sisters Network, Inc: Works to increase local and national attention to the devastating impact that breast cancer has in the African American community.
Fearless Warrior Project: Mission is to empower, inspire, and coach communities of color affected by cancer and to help their families find their superpowers within.
Karen’s Club: Empowers cancer patients of color to pursue clinical trials that can save or extend their lives.
Shades of a Cure: Team of women that are dedicated to awareness, prevention and most importantly finding a cure for ALL types of cancer.
Resources for Financial Assistance for Cancer Patients
Patient Advocate Foundation Co-Pay Relief provides direct payment for co-pays, co-insurance, and deductibles for patients who need financial assistance. 866-512-3861
RxAssist - Patient Assistant Program offers a comprehensive database of these patient assistance programs, as well as practical tools, news and articles so that health care professionals and patients can find the information they need. 401-729-3284
RX Outreach is a nonprofit organization that provides affordable medicines for those who qualify financially. Provides 90-day and 180-day supplies of prescription medications, regardless of the number of pills your doctor prescribes per day for most medications. Help is available to people regardless of age or whether they use another discount medicine or patient assistance program, and even to those who currently have a pharmacy benefit, such as Medicare Part D.
Health Well Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including prescription drug coinsurance, copayments, deductibles, and health insurance premiums. HWF is offering financial assistance with copays related to behavioral health care for people with cancer. 800-675-8416
Medicine Assistance Tool gives patients, loved ones, and health care providers a single point of access to hundreds of public and private assistance programs, as well as connecting them with more transparent information about the cost of medicine.
Cost Plus Drug Company offers hundreds of common medications at the lowest possible prices.
Meet the Guest of the Episode
Lisa Petgrave-Nelson
Lisa is a Licensed Master Social Worker, a Certified Oncology Social Worker, a trained End of Life Doula and an NYU Zelda Foster Leadership Fellow.
She is also a student at Wurzweiler School of Social Work where she is currently pursuing her DSW degree, Doctorate in Social Work.
She has worked in direct practice with chronically ill adults for over twenty years in settings that include Emory University Hospital, Cancer Treatment Centers of America, and The Cancer Institute at St. Francis Hospital.
An invited presenter at a variety of venues educating professionals and social workers about issues related to grief and health disparities.
These topics have been the focus of her research study entitled “COVID-19 Narratives: Stories from the Oncology Setting and many of her published articles and presentations including The Journal of End of Life & Palliative Care.
Lisa remains an ardent advocate for healthcare equity especially for those in under-served communities.
IG : @diaryofablacksocialworker
