Being Well Informed Helped Me Cope with Breast Cancer

Doing research about my disease and being proactive in my care made me feel empowered instead of scared.

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When you have cancer, it’s imperative to have a medical team you can count on to help you decipher the medical jargon being thrown at you and to get you through the maze of treatment options so you can make informed decisions about your care.

—Kate Callahan

I had been putting off getting a screening mammogram for a few years. When I finally made an appointment in March 2011 and was told that I needed a follow-up sonogram because the test had picked up a suspicious-looking mass in my right breast, I knew I was in trouble. A biopsy of the tumor showed that I had invasive ductal carcinoma.

Because the tumor was small—2½ cm—my surgeon recommended a lumpectomy. Fortunately, the pathology report showed that the cancer had only spread to two axillary lymph nodes and that I had clear tumor margins, so the disease was classified as stage IIA. I was prescribed 28 sessions of adjuvant radiation therapy, no chemotherapy, and a daily dose of letrozole for 5 years.

Even though my oncologist said that my prognosis looks good, I’m not taking anything for granted. Having always maintained a pretty healthy lifestyle, I’ve stepped it up since my breast cancer diagnosis, eliminating processed foods and sugar from my diet and increasing my exercise routine to stave off recurrence.

Challenges to Overcome

My biggest concern from the start was the effect my diagnosis would have on my two daughters, aged 24 and 19. I wanted to keep them as calm as possible, and I put as positive a face on my ordeal as I could to keep them from being afraid. What helped me the most was the research I did on my type of breast cancer. Being informed and proactive in my care was empowering to me, and I never felt panicky. I just stayed focused on becoming cancer-free.

Along the way, I had to deal with a series of mishaps, including a methicillin-resistant Staphylococcus aureus (MRSA) infection following my lumpectomy that was so serious I had to wear a wound vacuum to drain the infection. Next, basement flood ruined furniture and mementoes from my daughters’ childhood and cost me $7,000 to clean up. Nevertheless, I wouldn’t allow myself to get discouraged. I looked at everything that was happening as a challenge to overcome, and that attitude really gave me—and my daughters—the courage to move forward.

Frustrations with the Medical Team

Being successful at facing down challenges, however, didn’t mean that I never experienced real frustration as I went through my treatment and recovery, especially with some members of my medical team. Although I was assigned a nurse navigator to help me understand my treatment protocol and to answer my questions, she was so busy helping other patients, I never felt I was getting her full attention. My concerns were either dismissed or smoothed over. The same thing happened with the second nurse navigator I was assigned, but this time the consequences were more than just mere inconvenience.

Four days after my lumpectomy, I called my nurse navigator to tell her that I had severe bloody leakage from my incision. She said to put a clean dressing pad on the wound and to call the office emergency number the next day, which was a Saturday, if the incision was still leaking. When I spoke to the on-call surgeon the next day and explained the problem, she told me to just change the dressing pad. By the time I saw my surgeon for my regular follow-up appointment 3 days later, I had a raging MRSA infection.

Having breast cancer put me in unchartered territory. I was depending on my medical team to help me understand what was happening to me and to help me get well. It’s not that I think that the nurse navigators were incompetent. I think they were just overburdened with too many patients and didn’t fully embrace the patient-centered medical home model being practiced in my hospital, which is meant to keep the focus on the patients.

Importance of Self-advocacy

What I’ve learned from this experience is that patients have to be their own best health-care advocates. While my oncologist and radiologist have been very proactive and I’m very satisfied with them, I still believe a patient has to face a cancer diagnosis armed with the most accurate information available and persistently ask questions if anything is unclear or when problems arise.

When you have cancer, it’s imperative to have a medical team you can count on to help you decipher the medical jargon being thrown at you and to get you through the maze of treatment options so you can make informed decisions about your care. Unfortunately, that was not always my experience. ■

Kate Callahan is an adult aftercare specialist in a mental health agency in Annapolis, Maryland.