“Who I am Matters”: Personalized Medicine & Empowered Patients
Meet Stephanie. A mother, wife, friend to many, medical sociologist, researcher, and professor at the University of Texas. She is also living with cancer.
Stephanie was diagnosed with breast cancer on the winter solstice of 2016, a day she often references as the “darkest day of the year.” On top of dealing with a new cancer diagnosis, she was also learning that she had a unique and specific form of cancer — BRCA mutation positive, triple negative breast cancer.
Upon discovering her breast cancer diagnosis, Stephanie began interviewing surgeons and oncologists to formulate her own team that she wanted to experience her treatment with. While her cancer was a very specific type, her initial treatment plans were not.
She had what she called “the whole kitchen sink” of cancer treatment: chemotherapy, radiation, surgery, all of it.
During this initial phase of her treatment, she was seeking out information left and right. Information on her genetic predisposition, cancer treatment options, anything she could get her hands on. Stephanie would even bring the medical journals and articles she found in her free time to her physicians in the hopes of them working together to get the best outcome for her.
“You don’t know if the area that’s making rapid strides is going to be one [that benefits you] but I’m always hopeful. I’m always willing to be part of that conversation.”
Stephanie showed that she was willing to explore new and innovative therapies with her care team. Her appetite for innovation and advancement went on to shape the way her cancer was treated for years to come. Stephanie underwent surgery to remove the cancer in her breasts but soon discovered that some of the cancerous tissue was left behind. Following this discovery, she moved on to a new oncologist who recommended biomarker testing.
Biomarker testing is a kind of laboratory test run on a patient’s blood to identify any individual-specific biological molecules that give physicians a better idea of how to treat the patient.
This kind of testing is often used in personalized medicine and can confer impactful benefits to patients with cancer such as measuring one’s risk for recurrence, monitoring a patient’s response to treatment, and selecting treatments based on results from each test. For Stephanie, these results shaped the way her cancer would be treated from that point onward. From biomarker testing, she discovered important biological characteristics specific to her cancer that could be used for treatment. Due to scientific advancement, cancer drugs have been identified to treat triple negative breast cancers with her biomarkers directly. After undergoing such general cancer treatments, Stephanie felt hopeful and optimistic about this new outlook her oncologist had on her treatment plan. Her oncologist wasn’t just treating any cancer patient, she was treating Stephanie’s cancer.
Following those results, she and her oncologist sought out all the information on treating forms of breast cancer with her biomarkers they could find. They eventually found a specific type of medication known to be effective in treating triple negative breast cancer. Stephanie tried out multiple types and combinations of triple negative breast cancer-specific drugs. She listened to her body’s reactions to the medications to find which one she wanted to stick with. She sought out even more research with the new information she had acquired and went into her doctor’s office to discuss what she had found for hours at a time. While Stephanie was able to find a lot of the information on triple negative breast cancer, she did not attend medical school. Like many cancer patients, she couldn’t fully comprehend a lot of the medical jargon being used at that time. Her oncologist was willing to listen and educate her on all of it, showcasing both of their efforts to have a collaborative partnership for Stephanie’s care.
A common theme throughout Stephanie’s entire cancer experience is the powerful personal advocacy she showcased. In every phase of her treatment, Stephanie was an active participant in shaping her oncology team, choosing her medications, and framing how cancer played a role in her life.
Firstly, she was able to advocate for herself based on her own trust in her instincts. She wouldn’t settle for an oncology team she wasn’t completely comfortable with. Stephanie made sure to seek out the best oncology team for her who she felt heard and supported by. This kind of personalized, patient-centered care is what every cancer patient deserves but it requires a consistent effort from both the patient and their oncology team.
While Stephanie is clearly an incredibly diligent and resourceful woman, as a medical sociologist, she also recognizes the privilege she has in her education and access to information. From being educated enough to understand the research she was finding, to having access to expensive medical journals, to having quality health insurance, Stephanie saw how a lack of these things could shape the cancer experiences of the patients around her. As she was getting a glimpse into all the nuances of the cancer experience, she decided to take the information she was learning on where cancer treatment fell short for many individuals, and teach the next generation of healthcare professionals, policymakers, and caregivers what these gaps in cancer care could be.
She created a course, “Cancerland”, centered around the sociological aspects of cancer from how race, gender, and religion shape the cancer experience to how cancer experiences are different across the planet.
By teaching her students, she hopes to open their eyes to a world of better and more equal cancer care for all individuals so that they can attempt to remedy these issues when they enter the cancer field. In this course, she also hopes to “[make] space for cancer” in everyone’s lives. Just the term “cancer” holds so much weight for so many people and carries stigma with it that many people just avoid discussing it altogether. This stigma can make it so that individuals with cancer feel less able to be heard and supported in a constructive way. Many students taking this course have experienced cancer in their families or even experienced chronic illnesses themselves. This class serves to give her students the opportunities to share their stories in a meaningful way.
Stephanie continues to not let her cancer define her as an individual. Stephanie believes “No matter what I do, who I am matters.” She does not let herself become just a cancer patient because she truly is much more than that. While cancer is always going to be a part of her life, her roles as a mother, educator, and advocate are a bigger part of who she is. Stephanie is determined to get the best personalized care for herself and advocates for patients who may not have the privilege to do so. Who Stephanie is matters for her own cancer and for the impact she makes on the cancer professionals of tomorrow.