genetics | The Best Worst Case

Getting tested for the 26 cancer genes was extremely nerve-racking for many reasons, but mostly because the woman who talked to us did so with unreserved glee. There was a twinkle in her eyes when she asked, “Do you know why you’re here?” Genetic Jessica didn’t give me a chance to answer. Instead she leaned in across the table and announced dramatically, “Because you are WAY too young to have cancer. WAY too young. And I’m going to tell you all about the genes you don’t want to find out that you have.” She leaned back into her chair, tilted her head to the side and gave me the oh-you-poor-thing-you-have-cancer face. Cancer face, that’s what Amelia and I call it. We all know what that face looks like. If you think you’ve never seen it, try replacing the word ‘cancer’ with other words, like divorce, miscarriage, losing a job, break up, or addiction, to name a few.

When I gave the geneticist my history (mother just diagnosed with breast cancer, brother with an unidentified melanoma-type skin cancer a decade ago), she gave my a very grave look and pointed at one of the cancer genes on her chart of horrors. “This gene right here links breast cancer, melanoma and pancreatic cancer.” She raised an eyebrow and gave us a knowing look followed by a dramatic pause. Who the hell is this woman? I wondered. And why is she pelting us with massive amounts of negative information without taking a breath, almost proud of herself for the speed of her delivery of morbid news. I felt like she wanted to reach across the desk and shake me by my shoulders and then squeeze me into her bosom. Back off, lady.

A month later I found out that I don’t have any of these genes, but Genetissica wanted me to come back to meet with her anyway. Why? Well, Leah, there’s this other gene, that could be meaningless, and we don’t really know what it does, if anything, and it won’t affect your treatment choices, but I can tell you all about it in person. Um, hell no, Genetissica! I’m not spending another hour in your office of doom and drama.

Genetic testing is pretty amazing though and will continue to be a great tool for all sorts of illnesses. This ‘other gene’ I have is RAD51C, and there’s not enough data out there to even be talking about it yet. Ask me again in ten years.

The next appointment we have is with an oncologist. Dammit, I now have an oncologist.

The pathology reports came in electronically. (We love technology. That we can view all of my records and test results online is amazing.) Trying to decipher a pathology report without a medical professional is pretty hard. There’s only one thing that we really came away with. During surgery, the pathologist in the operating room found a 2mm area of cancer cells in a lymph node. This was classified as a micro-invasion which is a very grey area as far as treatment goes. All of the tissue was sent to the pathology lab for more thorough testing. The new pathology report says two lymph nodes testing positive for cancer, the largest tumor being 6 mm, which is a macro-invasion. This means I have Stage 2a cancer. Well, shit, this is not a grey area anymore.

Hormone receptor tests came back, too. I am negative for estrogen and progesterone, but I am positive for HER2 (human epidermal growth factor receptor 2). This, to me, is good news because HER2+ has very successful treatment with Herceptin, a drug that targets the HER2 receptors.

I am doing a lot of what if-ing right now, trying to prepare for the next steps emotionally. My sense all along has been that I’ll need chemo but I keep hoping for some little light to point in a different direction. It’s a waiting game, still. And I’m full of questions, some of which I don’t want to even ask out loud.

There is more good news. Genetic tests came back all negative. I don’t have any of the scary cancer genes.

Last month I was stressing out about re-wiring lights and tiling a floor. This month I’m relieved that I don’t have scary cancer genes, and I’m beginning a long journey of healing after a mastectomy. Perspective.