Turning a Tough Diagnosis Into a Campaign for Positive Change

By Eva Starrak

Being a patient is hard. Facing a life-threatening or chronic illnesses is completely overwhelming, and too often patients feel as though they do not have a voice, or are unable to describe their needs accurately when they’re in the clinic. Stacey Tinianov, a member of the Flip the Clinic community, knows that feeling all too well: When she was diagnosed with breast cancer in 2013, she felt overwhelmed and without clear options.

Four months after her mother was diagnosed with breast cancer, Stacey received the same news. Within two weeks of that initial bombshell, her doctors advised her to undergo a single mastectomy, followed by rounds of chemotherapy. Stacey, an otherwise healthy, active, and outgoing young mother, was shocked by the lack of discussion when it came to her personal health. What if the prescribed treatments were ineffective? What if there were other, less invasive options? Armed with these questions, Stacey insisted that her oncologists performed both genetic and genomic testing to determine the best course of treatment. The results of the testing showed that Stacey would not extract much benefit from the recommended chemotherapy treatment. Stacey underwent a single mastectomy and sentinel node biopsy in June of 2013. In early 2014, she had her second breast removed. Since that time, Stacey has begun the long journey towards bilateral reconstruction while taking the anti-estrogen medication, Tamoxifen, twice each day.

She has also become an advocate, fighting to turn her negative experience into a force for change. As a patient, she had to learn how to articulate her needs and goals to her health care team. As an advocate, she knew she could help other patients do the same.  In February of 2015, Stacey joined the Flip the Clinic team at its inaugural Lab in San Francisco, CA. There, Stacey collaborated with other Lab attendees to create Flip #33, the global #IWishMyDoc and #IWishMyPatient social media campaigns, which serve to open dialogue between patients, caregivers, and clinicians. Now, patients and clinicians can use platforms like Twitter to offer actionable suggestions to help others make the limited time patients have in the clinic more effective. By sharing her own experience and enabling a mutual exchange of ideas, Stacey is working to open the door to systemic change that promotes caring for the whole person, not just the disease.

Watch this video to learn more!