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By Annie Goodman, ,
Published October 23, 2015
When something is wrong, I can feel it in my gut. Whether it be the way a radiology technician looks at me, the way a doctor walks in my exam room, feeling a lump on my body, waking up with a headache every morning or getting lost in a familiar place. When something is wrong, I always know before the test results need to be read out loud to me.
I was diagnosed with stage IIB triple negative breast cancer two years ago when I was just 30 years old. I learned I had the disease after feeling a lump, going to the doctor, having a mammogram, ultrasound and biopsies. I was devastated because I had no family history of breast cancer; only after my diagnosis did I find out I have the BRCA1 genetic mutation, which is closely linked to triple negative breast cancer. I endured a double mastectomy and reconstruction, 16 rounds of aggressive chemotherapy and 25 zaps of radiation. But that was not enough treatment to keep this particularly rare and nasty subtype of breast cancer out my body.
In November 2013, about a year after I finished treatment, I went to the doctor for a routine ultrasound of my ovaries. The BRCA1 mutation put me at an 87 percent risk of developing breast cancer, and it also put me at a 44 percent risk of developing ovarian cancer. After the test, the technician left the room but told me not to get dressed. I knew something was off. When she came back into the room, she told me to get dressed and I would get the results from my gynecologist.
Almost the minute I walked into work my phone rang. My doctor’s staff said I needed to come in immediately. It normally takes three months to get an appointment with this specialist. I knew she wasn’t calling me in to report good news. My right ovary was 11 centimeters with a complex mass in it.
Ovaries are typically 3 centimeters large. Based on further imaging and tests, I decided to have a complete hysterectomy. Totally surrendering my fertility at 32 years old was not an easy decision, nor one I regret. At this time, my doctors were under the impression I had developed ovarian cancer, and I wanted to be most aggressive to treat this new cancer as it was attacking me. What we found out later after the pathology report was that triple negative breast cancer had returned to my ovary. I now had stage IV breast cancer, also known as metastatic disease.
At the time of the surgery, my other organs appeared to be clear. Unfortunately, a scan in December revealed the cancer had spread to my lungs. But that would still not be the most urgent health crisis I was facing at that time.
One night in late December, I had what I thought was a typical migraine. When the headache lingered every morning for about two weeks, I assumed I had a sinus infection and it would ago away. When I started having bouts of confusion, feeling depressed and occasional loss of vision, I assumed I was experiencing panic attacks and it was nothing serious.
Just after the New Year, I decided to go out one night and buy a new winter coat. It was already a terrible winter in NYC, and I knew I needed something warmer. After my quick shopping trip, I made a visit to my brother’s apartment. I said "hello" to his doorman, and walked up the flight of stairs to his unit. But when I reached the landing, all I saw were doors. I had no idea where to go. A place I have been to many times, and I was completely lost. I later found out this was likely due to a seizure. It was one of the most bizarre experiences of my life.
Two days later, I noticed I didn’t have peripheral vision on my left side. I was walking into a wall in my apartment. I knew something wasn’t right. I called my oncologist’s office and immediately went to the ER for a CT scan. I knew what the scans were going to show. I finished the on-call doctor’s sentence before he could say it himself. The cancer had spread to my brain. I had six brain tumors.
I quickly had brain surgery to remove three of the brain tumors and followed it with 10 rounds of whole-brain radiation. I’ve also restarted chemotherapy. Soon, I will have MRIs and tests to see if treatment is working.
It has been a very difficult couple of months, but things are improving. I no longer walk with a cane, but I still have problems with my vision due to the location of the largest brain tumor. My short-term memory is not as sharp as before, which can be extremely frustrating. It is slowly getting better. I have lost my hair again, which to me is a trivial side effect from the treatments. I will do whatever I can to live.
This is how triple negative breast cancer behaves. It is extremely aggressive and moves very quickly. It does not care if you are only 32 years old, and trying to move on from battling cancer once before. It does not care how closely you are being screened, or how often you visit your team of doctors. And worst of all, it has no targeted treatments to prevent recurrences such as the one I am suffering from.
This is why the research and awareness being facilitated by the Triple Negative Breast Cancer Foundation is so important. March 3rd is Triple Negative Breast Cancer Awareness Day. We need awareness so researchers can finally find targeted treatment against this disease. Or better yet, a cure. My life depends on it.