Twenty years after her mother passed away from breast cancer, Colleen Boraca learned she had two conditions that increase her chances of developing breast cancer. Here, she shares the tips she’s learned to become a better advocate for herself and others.
My mother was diagnosed with breast cancer when I was 19 years old. While she was undergoing chemotherapy, I remember listening to her spend hours on the phone trying to get insurance coverage for the oncologist who was treating her. One day, she looked at me and said, “Being sick is a full-time job.”
Twenty-five years later, through professional and personal experience, I could not agree more with my mother’s statement. I went to law school and have used my degree to advocate for hundreds of clients facing poverty, in addition to mental health crises, HIV/AIDS, cancer and other medical conditions. They have found it nearly impossible to fight on their own for necessary services while also battling illnesses.
Personally, I had a benign mass removed from my left breast in 2019. After it was biopsied, the results classified me as high-risk for breast cancer. This news, in addition to my family history, inspired me to seek out doctors who would help with risk reduction (see The Tamoxifen Experience: Learning to Expect the Unexpected – Susan G. Komen®). This whole process felt like a full-time job in addition to my actual full-time job.
Through these experiences, I have learned helpful tips to better advocate for myself and others.
Take notes
In my purse is a small pink notebook where I write down as much as I can about my family’s health for each calendar year. I keep track of calls to insurance companies, dates that we start and end new prescriptions, questions for upcoming appointments and much more. If I called the insurance company or doctor’s office, who did I speak with? Is there a confirmation code for the call? If side effects started from medications, when did they occur? Did anything help make them less intense or worse? Life is too chaotic to remember these details, especially during a high-stress appointment. It helps to keep everyone’s information in the same book.
Prepare for appointments
When I am meeting a medical provider for the first time, I prepare a summary of the events/symptoms leading up to the appointment. That way, I avoid the pressure of remembering dates and events. It allows doctors to spend less time trying to reconstruct my history and more time coming up with a treatment plan. Even when I have a repeat visit with a doctor I know, I still review the MyChart notes from my last appointment. It helps remind me what questions I need to ask. For example, when I saw my oncologist last summer, my potassium levels were low. During the next appointment, I knew to check on them (many bananas later, they were fine).
Cautiously look to the internet for guidance
The internet can be a great place to learn about medical conditions, treatment options, medications and side effects. I belong to multiple groups on Facebook for individuals experiencing side effects from tamoxifen. These groups are a place of solace and inspiration, talking with others who are experiencing similar challenges. While communicating via these groups, I keep in mind that my situation is unique. For example, I started having jaw pain about a month ago. When I searched if anyone in the Facebook group had similar experiences, one individual had written that her teeth fell out shortly after jaw pain secondary to tamoxifen. After calming down, I talked with my dentist who assured me that my teeth were fine and that the jaw pain was likely due to my incessant teeth grinding.
Bring your people to medical visits
Medical appointments are stressful. Stepping foot into an oncology unit immediately transports me back to the days of accompanying my mother. Because of the emotion involved, I bring family members or friends to appointments when I know challenging topics will be discussed. When I first met with an oncologist to talk about taking tamoxifen to reduce my chances of getting breast cancer, I brought one of my friends along who is a breast cancer survivor. She knew the right questions to ask, and it helped me to have someone else listening. Even if they cannot attend in person, my doctors have been fine with friends/family listening via speakerphone.
Trust your instincts
There will be times when you will not agree with what you are being told by the medical community. Trust your instincts—you are the best expert of your life. If you are not comfortable with the opinion of one doctor, seek out another. If you sense you are not being given the whole story, push back. After I had my breast mass biopsied, I wanted a second opinion. The clinic where the original biopsy occurred was well known for not accommodating requests to leave their care. Per the request of the second-opinion doctor, I called to ask for the biopsy slides. The receptionist told me those were not my property and started lecturing me about HIPAA (note: I took a law school course on HIPAA and knew that nothing she was saying made sense). Rather than argue, I got creative. I asked one of my co-workers to call the clinic. She asked if they analyze their pathology slides in-house and the same HIPAA-expert receptionist told her that the clinic sends the slides to a local hospital. I called the hospital right away and had the slides in my hands within one hour. Do not take no for an answer when you know you are being wronged.
Accept hard days
Going through treatment for any condition is difficult. There will be days when, mentally or physically, you do not feel up to fighting with insurance companies. That is okay. Get some sleep and rest up—tomorrow is a new day.
My former supervisor used to say that the agency I worked at “fought the bureaucracy so that our clients could focus on fighting their illness.” Advocating for yourself during health concerns can seem overwhelming, but hopefully your struggles will be few so you can focus on getting better.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.
