By Jennifer Fei and Thelma D. Jones
On Wednesday evening, Oct. 21, the Thelma D. Jones Breast Cancer Fund (TDJBCF) Support Group held its Annual Breast Cancer Awareness Month Celebration via Zoom and Facebook live. Attendees tuned in from as far as North Carolina, Georgia, and New York to celebrate their survivorship and to support others fighting breast cancer. According to Derek Tawiah, TDJBCF Social Media Coordinator and Ambassador, more than 380 people tuned in through Facebook Live. TDJBCF Founder Thelma D. Jones served as emcee. She welcomed guests and discussed her 13 years of breast cancer survivorship with a rare Late Stage III B and HER2+. In total, there were over 100 years of survivorship among the attendees, who Jones recognized for their courage, strength, tenacity, and advocacy. SW resident Iman Brown, Marketing Coordinator, JMA Solutions, then shared warm greetings on behalf of JMA Solutions President and CEO Jan Adams, a devoted TDJBCF Honorary Board member who was unable to attend.
Breast Cancer Survivor Sheri Denkensohn-Trott provided the blessing and then gave an update on Team Undaunted Determination’s goal for the American Cancer Society’s Making Strides Against Breast Cancer (MSABC). To date, Undaunted Determination, which is actively supported by the TDJBCF, has raised more than $12,500, exceeding its original $10,000 goal. The initial goal represented Denkensohn-Trott’s 10-year cancer anniversary and the 10th Anniversary of the TDJBCF Support Group, which was celebrated virtually last April with great fanfare. Denkensohn-Trott, whose revised goal is at least $13,000, still welcomes donations at main.acsevents.org/goto/undaunteddtermination10, as this support helps make a difference in so many ways, from funding innovative breast cancer research to simply providing a hand to hold.
Corinne Bombowsky, Community Development Manager, American Cancer Society, cheerfully provided an overview of the campaign’s status and statistics on the amount raised, noting that the pandemic had adversely affected this year’s fundraising efforts while reminding us that “breast cancer doesn’t stop because of the pandemic.” To date, the MSABC Washington, DC has raised more than $142,000 of its $320,000 goal. Bombowsky also shared an overview of the schedule for the first-ever virtual MSABC event, which occurred October 24-31, 2020 and she acknowledged the TDJBCF for being a campaign sponsor.
Guest speakers Chawnte Randall, Stage 4 Metastatic Triple Negative Breast Cancer Survivor and Advocate, and Melanie A. Nix, MBA, Triple Negative Breast Cancer Survivor, Transformational Speaker, and Resilience Coach, provided powerful testimonies about their journeys as breast cancer survivors and advocates. Randall, who is an Army veteran who works for the federal government and the mother of a recent college graduate, serves on many patient advocate initiatives, including the Tigerlily Foundation’s Young Women’s ANGEL advocacy program for metastatic breast cancer disparities, a Living Beyond Breast Cancer (LBBC) Young Advocate and an individual member of the Metastatic Breast Cancer Alliance (MBCA). She also serves on the Board of Directors for METAvivor and on a patient advisory panel for Johns Hopkins Hospital and AstraZeneca. Randall discussed her first diagnosis with Stage II triple negative, an invasive breast cancer, in October 2017, at age 40. After a double mastectomy and nine cycles of chemotherapy, Randall showed no evidence of the disease until April 2019, when she was diagnosed with Stage IV metastatic triple negative breast cancer. She initially received radiation therapy for her bone lesions, but after the cancer’s progression to her liver, she enrolled in a clinical trial at Johns Hopkins Hospital. Randall said after the second diagnosis: “Initially I didn’t know how to feel,” and while she has some difficult days, she tries to keep a positive outlook and has found strength in sharing her story and learning from those who have gone through similar experiences.
Days after her second diagnosis, Randall attended LBBC’s Metastatic Breast Cancer Conference and it “changed [her] whole outlook on [her] diagnosis.” Through connections with others, research, and a sense of community from being surrounded by those with shared experiences, Randall began to learn more about the disparities in breast cancer treatment and research. She discovered that women of color with breast cancer were dying of the disease at a 42% higher rate than white women due to systemic racism and health disparities. In order to receive the care she needed, Randall had to be her own advocate. She found it extremely helpful to connect with support groups where members could gain and share knowledge. Randall indicated that she shares her story in support groups because “I want to make sure young Black women and other young women of color see themselves represented not only in the breast cancer world but also in the metastatic breast cancer community. It’s not an immediate death sentence like it used to be.”
Melanie A. Nix, MBA, TDJBCF Board Member, and mother of two, also discussed her journey as a fifth-generation breast cancer survivor. A native Washingtonian, Nix discussed how her family ties have shaped the way she lives her life. Growing up, she remembers being surrounded by other “beautiful and strong Black women” while seeing firsthand what breast cancer could do as her grandmother, mother, aunt, and other relatives battled the disease. Nix calls herself an “accidental advocate,” but from a young age she was exposed to advocacy work. In the 1970s and 1980s her late mother and late aunt started their own local organization to provide women with access to the care, information, and tools necessary to manage a breast cancer diagnosis and understand how the disease disproportionately impacts Black women.
Nix’s mother passed from the disease when she was 20, just before she graduated college. With support from her older sister, Nix continued her education through graduate school, built a corporate career, married, and had two children. During this time, Nix always prioritized her health through annual appointments. Nix remembered how her mother was always her own advocate. She left a dismissive doctor and did research to find a doctor who understood her family’s history and risk factors, especially for Black women. Nix’s OB-GYN encouraged her to get genetic testing.
In 2008, after consideration of her family’s history and testing positive for the BRCA1 genetic mutation, Nix, in consultation with her spouse, who she says “loved her back to life,” and her doctors, made the decision to have a preventative double mastectomy and oophorectomy. Unfortunately, during that planning stage, Nix was diagnosed with triple negative breast cancer. She went into “deep research mode” learning that triple negative breast cancer disproportionately impacts Black women, tends to recur faster, and it does not have long term treatment. Nix and her doctors decided they needed to treat the cancer aggressively. Nix recalled how her mother and her aunt also emphasized treating their cancers aggressively with tough short-term actions that would be beneficial in the long-term. She decided to have a double mastectomy (removal of both breasts), bilateral oophorectomy (removal of both ovaries), and 16 cycles of chemotherapy.
During this year-long treatment period, preventative surgeries, and reconstruction, Nix decided she wanted to use her voice to speak about breast cancer and especially how breast cancer disproportionately impacts Black women. Nix and Randall both stressed the importance of representation of Black women in the breast cancer community. Addressing bias within the medical community, advocating for Black women to be a part of clinical trials for breast cancer, and making decision-makers and lawmakers aware of the disproportionate funding, research, and impacts of breast cancer on Black women are all key to addressing the health disparities within the breast cancer community. Nix also chairs the Georgetown Lombardi Comprehensive Cancer Center Community Advisory Council which TDJBCF Founder Jones also serves on.
Dr. Richard Kennedy, MD, former Chief Medical Officer, World Bank Group and TDJBCF Board Member, hosted the closing portion of the event, where he also emphasized the importance of holding providers responsible and accountable to patients’ needs. Dr. Kennedy moderated a question and answer discussion with Nix and Randall, where the two women discussed the importance of honesty when discussing the realities of breast cancer with children, and finding ways to focus on their own self-care and mental and physical well-being. Nix and Randall also emphasized the importance of having a support system, noting that within the first weeks of their diagnoses, both women had surrounded themselves with trusted people they could rely on.
In concluding the discussion, both women stressed that young women need to be actively attending to their health by making their annual checkups part of their self-care, being aware of their own family histories, and working to prevent and reduce their risk of breast cancer and other diseases. Randall stressed that many statistics do not cover young Black women, and that being a self-advocate is key to maintaining one’s health. With regards to prioritizing the experiences of Black women in the breast cancer community, Nix added that you have to find a way to be part of the community conversation whether you get an invitation, invite yourself or start your own organization.
In her closing remarks, TDJBCF Founder Jones acknowledged the many supporters who helped to make the evening a resounding success and encouraged donations to the TDJBCF in support of their mission and vision by visiting the website at www.tdjbreastcancerfund.org and clicking the “donate button.” She also invited everyone to the virtual version of the annual Thanksgiving support group celebration on Wednesday, Nov. 18, at 6 p.m. via Zoom and TDJBCF Facebook live. For more information on the TDJBCF, visit www.tdjbreastcancerfund.org, email email@example.com or call (202) 251-1639.