The conversation included a practitioner (Dr. Swapna Ghanta), a caregiver (Jamie White, Health Science Strategy and Relations Lead at The National Institutes of Health) and three breast cancer survivors (Kristin Crosland, Ashley Libby Diaz, and Niyati Tamaskar).
Breast cancer shares the same health equity challenges of any other disease state. Dr. Swapna Ghanta presented (among other informative slides about the state of the disease) the statistic that breast cancer death rates were 40% higher in Black women than in white women. However, breast cancer is also unusual in that the rapid change in clinical understanding about the disease has itself become a barrier. Each of the three survivors on the panel received their cancer diagnosis before the age of 40, the date at which most women would expect to have their first mammogram. The panelists were young professionals, new mothers and paragons of physical and nutritional fitness. Each of them, throughout their journey to a diagnosis, were repeatedly and (ultimately) falsely reassured that “It wasn’t cancer”. This was not based on the latest scientific study, but on the general observations of the care team that they were “too young” and that their symptoms “didn’t look like cancer.”
The reality (as shared by Kristin Crosland) is that “Breast cancer (singular) is a misnomer. There are many different kinds of breast cancer.” Kristin’s own cancer had rapidly metastasized throughout her breast via long tendrils, never forming the classic “hard, pea-sized lump” women are advised to self-screen for. The survivors were told they had muscle inflammation, mastitis or even (as one primary care doctor postulated) a broken rib. With cancer presenting in so many different forms, Dr. Swapna Ghanta calls it “the great imitator”. Finding a health team that was not fooled by conventional wisdom but was willing to push through to an accurate diagnosis and effective treatment, was an integral part of each survivor’s fight.
The panelists also shared about the many social and cultural stigma that complicate cancer treatment. Niyati Tamaskar has given TEDx talks and authored a book about her experience as a cancer patient, a technical professional, a breastfeeding mother, and as an individual of Indian heritage. All disparate parts of her identity came into direct conflict when she started her own cancer journey. Even without a strong stigma, the transfer of potentially key medical data is not straightforward in family relationships. Ashley lost her grandmother as a child to what she thought was lung cancer. It was only after she received her own diagnosis that a family member clarified that the cancer had been metastasized from the breast. Dr. Swapna Ghanta pointed out how these cultural and social challenges need to be addressed by doctors when planning effective patient care. Many patients have a difficult choice between maintaining their privacy and self-identity and getting the resources they need for effective treatment.
Some new challenges have appeared from earlier successes. Earlier diagnosis and better treatment have created a growing population of cancer survivors. Not “cured” but survived. Cancer, as several panelists described it, is now a spectrum, with many women finding themselves along it at some point in their lives. Early diagnosis and treatment will mean fewer lives cut short, but more lives lived under cancer’s own unique rules. Niyati shared about the lost “luxury of not being a hypochondriac”. Dating, marriage, having children and building one’s career have not been part of the “typical” breast cancer patient’s lifestyle. Part of improving breast cancer care will mean providing solutions for cancer survivors to live their lives as fully as their non-survivor peers. These may be clinical (such as options for preserving fertility), financial (maintaining solvency under treatment) to social (finding support in peers with shared experiences). For Jamie White, whose mother and late grandmother were both survivors, mental health support is as critical a need as the physical treatment. Survivorship along the breast cancer spectrum takes a heavy toll on the mind. As Kristin soberly shared, “I am perpetually in treatment, I will be in treatment until it stops working”.
All the women survivors have now found themselves actively involved in advocating and educating other women about breast cancer. While Ashley mentioned that this “is the club none of us wanted to be part of”, she also spoke positively of how the experience has made her a stronger advocate for herself and other women.
MedtechWomen and MedtechColor are extremely grateful for the stories and insights shared by this amazing group of women.