My cancer diagnosis came as a painful reminder of the past and brought back fearful unknowns. For twenty-five years, I had buried the hurt I experienced as a child. I grew up, hoping to forget about the fragility of life, but with cancer, the anguish came rushing back into my consciousness. Once again, I felt betrayed, helpless and vulnerable. Betrayed by the hope that my genes, relative youth, and healthy choices would safeguard my life. It can be heartbreaking to face your mortality.

I was born in Los Angeles to immigrant parents. My mother had seen an opportunity for her children to escape the grinding hardships she had endured in Mexico, and she made a life for our family in a series of ethnic neighborhoods in Los Angeles where we were surrounded with others from similar backgrounds. I learned Spanish first, the only language my parents spoke. It wasn’t until I had spent several years in elementary school, and only after the decision-makers at the school had decided that I was ready, that I was taught English. This is one of the earliest examples of someone outside my family evaluating me and making life-changing decisions on my behalf.

When I was ten years old, my twelve-year-old sister was diagnosed with lupus. My parents followed the recommendations of her doctors to give my sister standard of care treatment which was usually well tolerated by lupus patients who could go on to live for many years. Unfortunately, my sister’s body could not tolerate the medications; she became increasingly more ill until she succumbed to organ failure after two years of treatment. I felt helpless and unable to do anything to help my sister or my family, and I saw the same helplessness weigh on my parents and my sister’s doctors. It was then that I knew that doctors did not have all the answers, and I understood that medical science was not yet as advanced as I had imagined.

I gave birth to my only child, Isaiah, when I was seventeen. My high school counselors suggested placing me in a program for pregnant minors which offered rudimentary high school courses I had completed several years earlier, saying I would have the opportunity to bond with other girls in similar circumstances. The counselors knew of my strong academic standing and confessed that the classes they offered were below my current grade level. But then, fortunately, they left it to me to decide. I could see their program would lead to the abandonment of my dreams and aspirations to go to college, so rather than accept the downward trajectory before me, I graduated from high school early and completed a Bachelors in Architecture and a Masters in Construction Management at USC. I was confident that even if the odds were not in my favor, I could rely on myself to make the right choices and succeed.

At age thirty-seven, a lump in my left breast sent me to my doctor who referred me for a mammogram at a community medical center. You may be surprised to learn that when they suggested a biopsy following a mammogram and an ultrasound, I was annoyed and almost didn’t schedule the appointment, thinking that this was an unnecessary procedure. Looking back, there were several reasons for my reaction. In addition to my own denial, no one explained to me that the lump was suspicious for cancer, possibly in an attempt to avoid freaking out the patient. And as a younger woman who had never had a prior mammogram, I did not realize that a referral for a biopsy implies a possible malignancy; I simply thought they suggested another test because they didn't see anything with the first two tests. It was my primary care doctor who first used the word "cancer" on the phone when I called to ask if it was a waste of time to get a biopsy. He had read the report and knew it was important to be blunt with me. Two weeks later I was diagnosed with Stage II invasive ductal carcinoma. I was incredulous; I was the first person in my family to be diagnosed with cancer. As a footnote, there is very likely a cultural component to my confusion about mammograms. Even now, despite my cancer diagnosis and everything I have been through, my mom has never had a mammogram as she believes that mammograms are overprescribed.

I was told I needed to find a team of doctors whose roles were not clear to me. I started making appointments and realized that I didn’t know which type of doctor I should see first, so I ended up with several combinations of doctors. What stood out most during this time was that the doctors did not agree with one another. Some recommended the most aggressive treatments due to my age, while others suggested biological tests which would guide my decisions. I wasn’t prepared for the variety of recommendations and contradictory guidance. One surgical oncologist recommended surgery first, while a medical oncologist recommended chemotherapy first. Their decisions seemed guided more by their areas of specialty than by the unique needs of the patient sitting in front of them.

My cancer has since progressed to Stage IV, and as I continue to make decisions about my care, I am aware of how much my decision making is influenced by my life experiences as a woman and a minority, as well as the experience of losing my sister at a young age. I have found it difficult to trust. I know that I have been unwilling to fully relinquish authority to my doctors, feeling that my intelligence and autonomy are under assault each time my doctors dictate the next treatment plan. My doctors don’t like it when I challenge them; after all they are the experts. I ask, “If I do what you say, will I be cured?” “There are no guarantees”, they reply. I understand that choosing cancer therapy is a statistical proposition, but putting aside your doubts and trusting your future to someone you have recently met is asking a lot of patients, especially when the side effects are potentially life threatening and the monetary costs astronomical.

I look for doctors who will listen. I want doctors who will convince me through scientific references that we are choosing the best individual treatment--doctors who will understand that if I play a role in deciding on my next treatment, I can live with my decision, regardless of the outcome. It is not a power struggle. It is a quest for personalized, patient-centered medicine.

Graciela Santillan is a Stage IV breast cancer survivor in active treatment. She is a member of the USC Norris CSAC and a Project Manager at a commercial general contracting company.

USC Norris Cancer Survivorship Advisory Council Blog provides a broad range of opinions which do not necessarily represent the opinion of the USC Norris Comprehensive Cancer Center. This and all information related to cancer, cancer treatment and healthcare should be discussed with your physician.