It was the summer of 2012 and I had just turned 37, my son was about to celebrate his first birthday and my daughter had just started school, It should have been the happiest time in my life, but instead I felt exhausted. I knew something was wrong, but I put it to the back of my mind, brushing off my concerns and blaming the tiredness and sharp pains shooting across my chest on being a run-down, tired mother. However, by November, the pain was so intense I knew I had to make an appointment with my primary care physician. It felt like a knife was stabbing me through the ribs.

Although I had stopped breastfeeding three months earlier, my doctor was convinced I was suffering from a bad case of mastitis - an inflammation usually caused by breastfeeding. She prescribed me antibiotics and suggested I make an appointment with a breast surgeon at the local cancer centre, 'just to be sure'.

A week later, still in pain, I saw the breast surgeon. She told me I had advanced breast cancer and urged me to drive down to the local emergency room immediately to get additional tests and start chemotherapy that weekend. It turned out I had an 11-cm tumour in my left breast, which was sitting on my nerves – that’s why I was in excruciating pain.

I was diagnosed with inflammatory breast cancer (IBC) with axillary lymph node involvement, including supraclavicular nodes. IBC is a rare, aggressive form of breast cancer that usually affects young African-American women. The cancer cells attack the skin and lymph vessels around the breast, and about 5,000 cases are diagnosed every year in the United States. I was told I had about two years to live if the treatment failed.

Then they found a rib lesion and I was diagnosed with stage IV IBC. I thought, ‘Okay, I’m going to show up, I’m going to get this treatment and it’s going to shrink my tumour’, so I was shocked when the chemo failed. I didn’t even know that could happen. When the community cancer centre said they had no options left for me it was mind blowing. What I didn’t know at the time was that a complicated diagnosis always needs a second opinion, and it wasn’t until much later that I began to understand the politics of cancer care.

A second opinion

Finding the right oncologist can make or break your cancer experience. I was referred to my first team of doctors by my primary care physician. I had a great vibe with my first breast surgeon – she was smart and kind, and I trusted her implicitly. However, I did not have a great connection with the team of oncologists. They were not there at the crucial moments. When my family and I needed them, they brushed off our concerns.

Without my family guiding me and helping me to find multiple opinions and navigate the healthcare system, I would not be alive today. Patients feel awful physically and are trying to cope with the reality and emotions involved with a cancer diagnosis. The medications and side effects take such a toll that it takes really focused, determined patients to ask all the questions and manage their care while in treatment for advanced cancer.

I was so lucky to have a family who fought for me – my husband, sister, and father would not take ‘no’ for an answer, and their commitment to getting me in front of the top doctors saved my life. It takes so much mental and physical stamina to push the doctors and ask the right questions, particularly if you are on pain medications.

Given the terrible prognosis I was facing, we wanted to get a second opinion. So, my family started making calls. In the US, each cancer centre gives you a binder of information about your disease, but it’s incomplete, and often the information doesn’t relate to your local area. For example, when I went to get a second opinion in Texas the resources were not helpful for me in California. The disjointed nature of the information was really frustrating.

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