I’m famous!

On Tuesday morning, I heard about Angelina Jolie’s preventive double mastectomy. I started to write a blog post about it, but it turned into more of an article, an article that ended up being published on The Huffington Post!  I’ve pasted it below, but you can also read it here. I’m happy to be contributing to the dialogue about gene mutations, breast cancer and preventive measures. I’ve also been talking to the Huffington Post about contributing blog posts from everybodyhearts.com to their site, so I’ll be working on that too!

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Angelina Jolie has just gone public with the news that she had a preventative double mastectomy. As a BRCA1 gene mutation carrier, she had an 87% higher risk of breast cancer and a 50% higher risk of ovarian cancer.

In January of this year, I also found out that I have the BRCA1 gene mutation. For me, the test came late, after I had already been diagnosed with an aggressive form of breast cancer, one that had already spread to my lymph nodes. Diagnosed in December 2012, at the age of 35, and just 5 days before my son’s first birthday, the news was a total shock. I knew that the gene ran in my family, but I had yet to be tested. Unlike Angelina, who had watched her mother battle cancer for over a decade and die at the age of 56, I had not known anyone in my immediate family who had been diagnosed with breast or ovarian cancer.

Two years ago, before my life was turned upside down by the diagnosis, I remember speaking to my doctor about the gene. She asked if I wanted to be tested. I wondered whether knowing if I was a gene carrier would change anything in my life. Would I live my life differently if I knew I had a 70% higher chance of getting breast cancer? Would I change my lifestyle, rethink the decision to have a family, or embark on a new career if I knew I was 60% more likely to get ovarian cancer? These were big questions, ones that I figured I had time to think about. I was only in my mid-thirties after all, and I lived a healthy and active lifestyle.

She mentioned that some women who find out that they have the gene mutation choose to have preventive mastectomies and/or preventive hysterectomies. At the time, I thought this sounded like a very drastic decision to make. And frankly, I couldn’t imagine choosing it for myself. Now though, after being diagnosed with breast cancer, and undergoing treatment, I understand that choice much better. I completed 8 rounds of chemotherapy this March and two weeks ago, I underwent a double mastectomy. In a few more weeks, I will undergo 5 weeks of radiation. A preventative mastectomy would have saved me the grueling months of chemo and the radiation, and would have allowed for reconstructive surgery right away. Instead, because of the radiation therapy, I will have to wait many months before I can have reconstruction. The decision that had sounded so drastic a few years ago, now made sense. Drastic times call for drastic measures.

Towards the end of my chemotherapy, I attended a seminar on reconstructive surgery. I remember that I was feeling unwell at the time. I was exhausted. My hair had already fallen out and my skin was pale and grey. I recall putting my head down on the table as we waited for the session to start. A young woman was sitting next to me. I remember thinking that she looked so healthy. I guessed that we were about the same age. There were about 12 women attending the seminar. Through the course of the day, I would learn that 11 of us were either undergoing treatment for breast cancer, or had recently completed treatment. One woman, though, the young woman sitting next to me, was there because she had tested positive for the gene mutation and was considering a preventive mastectomy. She had watched her own mother battle breast cancer and now that she had become a mother herself, had decided to seek out options. Listening to her speak, I knew that before my diagnosis, I would not have been able to understand what she was doing. The decision seemed too big, too all-encompassing. Now, though, I understood that cancer could be all-encompassing in a way that I could never have grasped before. After the seminar, I asked her whether she had made any decisions. “Not yet,” she said, “but I’m leaning towards having the surgery.” I was feeling so horrible from the chemo side effects that day and at that moment, I wanted to say, “Yes, have the surgery. Do whatever you can to avoid this.” But I’m sure she was already getting a lot of unsolicited advice, so instead I just smiled and we wished each other luck.

As Angelina writes in today’s New York Times, “Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness.” She goes on to explain that the genetic testing is one way in which women can feel empowered, so that they can be proactive in preventing a life-threatening illness. It takes courage to do what Angelina did. That young woman at the seminar, and the many others like her that are faced with this decision, are also courageous. I have already received lots of emails about Angelina’s article. People are talking about gene mutations, and breast cancer, and prevention in a way that I hope will be productive. I think it took great strength for her to go public with her story, and I am grateful for her choice to do so.