In 1999, my mother Hong was diagnosed with stage 2 HER2-positive breast cancer. In 2001, it returned and in 2009, after a long battle, my mother passed away. I am thankful I had such a courageous mother and of the many good moments we had in those years. However, as an immigrant family and as the caretakers of a patient who did not speak English fluently, we had difficulty navigating the labyrinth of metastatic breast cancer treatment and at times were incredibly confused and isolated.
I can only imagine now how incredibly scared my mother must have felt when she learned her cancer had returned at age 40, less than two years from when she was diagnosed. None of us knew that breast cancer could return or that when it did, it would no longer be curable. I can only imagine how she felt as my father reluctantly translated what her oncologist said: you now have mets to the spine, you are stage 4 and there is no cure for you. I was 11, and my brother was just 2.
In the years following, we tried to do our best to obtain the best care for my mom. It was a challenge translating the types of pain she described to doctors and nurses. Reading scan reports often led to dictionary searches, and my father or I were always required to accompany my mother to appointments to translate. Additionally, culturally speaking, patients in China are less aggressive in patient-physician interactions than those in the U.S. where patient self-advocacy is encouraged, and we were uncomfortable questioning oncologists, at least initially.
The most challenging areas were obtaining accurate information on treatment and clinical trials for metastatic breast cancer and finding support. Despite the Pink movement and the focus on breast cancer in hospitals, we just could not find complete information on metastatic breast cancer treatment specific to HER2. The language barrier did not help. We knew of Herceptin, and we would hear of certain options such as taxanes and platinums, but we didn't have an understanding of all the treatment options.
Finally, during the duration of my mother's battle with metastatic breast cancer, we weren't able to find other stage IV folks to connect with and did not feel like we had a voice. After neither the Chinese language support group nor the hospital support groups my mother found had any stage 4 members, it dawned on me that metastatic breast cancer is still in the shadows. Earlier this year, I found the Metastatic Breast Cancer Network, a national, independent, non-profit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer. By volunteering with MBCN and sharing my story, I hope to bring more attention and research funding to this disease. Sue Yao is a member of Cornell University's Class of 2012 where she is majoring in policy analysis and management. Contact her via MBCN at email@example.com.