Treatment 3 min read

The Launch of Genome Magazine (aka Why My Mission Is Personal)

By Susan McClure featured image

Our first issue of Genome has arrived, and I’m thrilled to bring patients into the discussion about personalized medicine and its ability to transform healthcare. We’re entering an exciting time in medicine, one in which a patient’s genetic information will be used to determine the best treatment path for each individual. Our mission is to educate people about the power of their genome so they can have the information they need to get the targeted care they deserve. The one-size-fits-all approach to treatment is no longer good enough — and for me, it’s personal.

I’ve met many people who’ve been diagnosed since my own cancer “event” in 1997, but my friend Leigh was different. She was the first person I had ever met who shared the very same diagnosis I had received 10 years earlier. When we met for lunch, she was distraught. Less than a year before, she had witnessed the recurrence of her boyfriend’s non-Hodgkin lymphoma. She didn’t know him when he was diagnosed the first time and was committed to helping him knock it out a second time. He didn’t. “Please tell me that I won’t experience all of the horrible things I had to watch Scott endure,” she pleaded. I assured her that this would certainly not be the case. “Look,” I said, “we have the exact same diagnosis. They’re recommending the same treatment plan that I was given, and I’m still here, aren’t I?  You’re young, you’re strong, and you’re going to get through this!”

Leigh was “lucky.” She caught her stage 2b breast cancer early, before it had spread to any lymph nodes. Like mine, her cancer was triple negative, which wasn’t great because people with HER2-positive cancer had new, targeted treatment options, but on the flip side, she wouldn’t have to take tamoxifen for five years post-treatment, an option laden with side effects. Hey, if Adriamycin and Cytoxan worked for me, they should work for her, right? Leigh left our lunch feeling more hopeful and began treatment a few days later.

After roughly six months of treatment, Leigh was declared “cancer free.” We celebrated by throwing a “radiation celebration,” complete with glowing green cocktails served in test tubes. Although she lost her beautiful long curls during her rounds of chemotherapy, she looked adorable with the new pixie cut she was sporting. “I may keep it this short,” she said. “I love it, but let’s face it, I’d love any hair at this point!” When asked how she felt about being a survivor, she shrugged and said that she didn’t want to be labeled by her cancer experience and was ready to put the whole thing behind her.  She laughed and said, “I guess I got cancer without the epiphany.”

A few months later, Leigh called to tell me that she was experiencing a nagging pain in her rib. I told her that it was common to worry about every ache and pain for months (sometimes years) after treatment, but to be safe she should call her doctor so they could put her fears to rest. Her healthcare team assured her that it was probably nothing but recommended that she come in so they could check it out. To everyone’s horror, her cancer was not only back, it was everywhere.

On January 5, 2008, Leigh passed away. What I’ve learned since her death is that our cancers weren’t the same. Today we know that the individual characteristics of a person’s cancer make each one unique. We’re moving away from the one-size-fits-all treatment approach to targeted therapies that have been proven to interact with genetic biomarkers that either protect us from or promote cancer’s growth. This is such an exciting time in medicine. I just wish Leigh were here to see it.