Roberta Albany is a formidable breast cancer patient advocate and spokesperson for health disparities. Her work with Living Beyond Breast Cancer and in her own community at Cancer in the Know has gained her great respect and why I am excited to interview this friend and colleague in the breast cancer space for Episode 12: Patient Advocacy and Health Disparities for the DiepCJourney Podcast.
The Making of a Patient Advocate
Roberta did not set out to be a spokesperson and patient advocate for the breast cancer community. Her diagnosis defined her role and lead her to this work. She describes her experience with the diagnosis she received in October of 2013. Bobbi found a lump while training for a half marathon with her running group, Black Girls Run.
She could not remember if she had done her monthly self-breast exam. She recalls her breast had been bothering her, especially the left side. Upon doing her breast exam she found a lump in her left breast close to underarm pit. She went to her oncologist who scheduled an ultrasound and mammogram. The lump did not show up on the mammogram but did on the ultrasound. Lessons learned from her experience are:
- Do your monthly self-breast exams, ALWAYS! Be sure to feel more than just the breast tissue. This is a good instructional page on self-breast exam from the National Breast Cancer Foundation: https://www.nationalbreastcancer.org/breast-self-exam
- Mammograms do not always detect lumps. Sometimes and additional screening tool called an ultrasound is needed.
- If you have dense breast, know that screening is very important to detect difficult to find lumps. Ask your radiation oncologist if you present with dense breast tissue.
- Know and understand your type of breast cancer because there is more than one kind: ER/PR +, HER2-, Ductal, Invasive, Inflammatory, triple negative, metastatic to name the ones most well-known. There are others and you will be given this information after a biopsy and pathology report. They require different treatment options depending on the type, size, and location of the tumor.
- Take a trusted friend/family to your appointments to listen and help write down what is being said at the consult.
Making Decisions About Your Treatment as a Patient Advocate
Bobbi took matters into her own hands and began to educate herself about what type of breast cancer she had. She had her left breast removed in February of 2014. Her medical oncologist wanted her to begin chemotherapy in April after her healing and recovery from surgery.
Bobbi decided to control what she could control at the time. Her friends at Black Girls Run were having the Hot Chocolate race in April. She set a goal to run with them before starting chemo and radiation. After some hesitant approval from her oncologist, she joined the run. Her BGR sisters surrounded her with support, and she finished the 5K race. A week later, she was in the infusion center starting chemo.
The Patient Advocate Mentor
Bobbi was connected to a woman who became her inspiration and mentor through her running club. She keeps this friend close to her heart after she passed from metastatic breast cancer. She taught her the African American community needs a strong advocate to encourage speaking up about breast cancer. Bobbi’s mentor taught her to speak about metastatic breast cancer in her community so women would know recurrences happen and there are times when it becomes metastatic. Bobbi’s hope is there is continued research and funding for treatment of metastatic breast cancer so that it becomes a chronic disease and not a terminal disease.
Health Disparities in Breast Cancer
We continue our discussion about the lack of education in our own communities and how we feel our roles as patient advocates can change disparities in health care. She shares her experience advocating on “the hill” in Washington, lobbying with the National Breast Cancer Coalition to pass legislation to improve access to care, fund research, and educate those in her own community about breast cancer. Bobbi and I met at project LEAD in July of 2017 through a scholarship funded by the National Breast Cancer Coalition and bonded over late night studying about the tumor biology of breast cancer.
Bobbi experiences judgement in her role as an advocate and being a black woman. She wants to dispel the notion that she and others are speaking up as “angry black women” and instead are women of color bringing awareness to disparities in health care. She shares her experience of a doctor telling her what she thought she should do with her body when Bobbi approached her about a surgical preference she was considering. The doctor did not engage in shared decision making and told Bobbi what she thought she should do. Instead, Bobbi wanted her to actively listen and then discuss with her all her options for the best decision for Bobbi’s long-term health. This is her message to others in her community now.
The Voice of Patient Advocacy and Health Disparities
I am honored to know Bobbi. The passion she shows for her work is admirable. What I see most, is a woman of conviction with a warm touch of humility. Bobbi is not in this for her own personal accolades but to serve and help others. Episode 12 of the DiepCJourney Podcast: Patient Advocacy and Health Disparities with the illustrious Ms. Roberta Albany can be listened to in its entirety by clicking on the link below. Enjoy!