TNBC and Me: Diary of a two-timer

Triple-negative breast cancer was a primary focus of my life for nearly 9 years. First, of course, came family and friends. Then came my TNBC education and advocacy. I woke up thinking about it, I went to bed thinking about it.  My goal: to clarify that, while TNBC can be aggressive, most women survive it and live the beautiful lives they had planned before diagnosis—often with a bit more verve and meaning.

When I was diagnosed in 2006, I knew nothing about the disease, other than the somber assessment of docs who made me think I was going to die. So, I researched TNBC and this turned into a blog, Positives About Negative, that turned into a book, Surviving Triple-Negative Breast Cancer. I knew that other women were probably as confused and panicked as I was and I wanted to share what I had learned: You can survive.

Along the way I met hundreds of other women who had beaten TNBC, some for many decades. I included several of them in my book; others became virtual friends. Newly diagnosed women often reached out to me, needing hope, information, and perspective, which I was delighted to share. These wonderful women, in turn, enriched my life beyond measure.

But I also met delightful women who then sent me the dreaded email, usually titled “update” or “news.” I opened those reluctantly and, occasionally, the news was good. Too often, it wasn't. The cancer had recurred.

I lost Lori, then Marilyn, and Joy, and Karen and Linda. And Neeraja and Carol. And, just yesterday, Priscilla.

It was still true that most women survived, but I was feeling serious loss. I had beaten the disease, but it was still taking over my life.

As the years went by, I had been encouraged that researchers were spending more and more time on TNBC. More important to me as a journalist, though, was that others began writing about TNBC, often with more medical expertise than I had, and increasingly without the doomsday words and phrases (lethal, deadly, highly aggressive) that characterized earlier writing.

This, I felt, was a good time to bow out. The breast cancer world could do just fine without me.

So, In December 2014, I wrote a post titled “I’ve Had My Say.”  The message: I was done with breast cancer.

Yeah, right.  In June 2015, 6 months after signing off, I was diagnosed again. A second primary cancer, not a recurrence. Very small, highly survivable.

Seems cancer wasn't done with me.

My first reaction was anger. Seriously, me again? Come on. Go pick on somebody else, TNBC! My second reaction was a sense of failure. I had been trying to help women find their way through this disease, being their ray of hope, their champion, reminding them that they could beat the beast. And then I got it again.

I had a long conversation with myself about what to do. Do I go public, telling my blog readers about this new wrinkle? Or do I just keep quiet, not wanting to panic them? I chose the former, spending days crafting a blog post that explained my diagnosis and why, for what it was, it was good news. I went all-in on a positive title: “The Odds Are Overwhelmingly In My Favor.” I emphasized that it was a tiny tumor, only .4 centimeters, with no spread. Caught early on a mammogram, which improved my survival chances significantly. In the post, I heralded two of the women who’d guided me through this diagnosis—the breast cancer surgeon who wrote the forward to my book and another Pat who’d also had TNBC twice, the second time more than 10 years before. Two of the many blessings who have been part of my cancer curse.

The readers of my blog were absolutely wonderful in reaction to the post—I felt the virtual love. It was what my soul needed. All these amazing women—and men—who had never met me rallied to my side, giving me the boost I needed. More blessings.

I had a double mastectomy, which I wished I’d done the first time instead of the lumpectomy, and that was it. It was in the same breast, so it could not be radiated again, and it was too small for chemo to do any good.

But the difference between a second primary and a recurrence still confused many people. Short answer: a second primary has the same prognosis as if I had not had breast cancer before. In my case, because the tumor was so tiny, the prognosis was excellent. It was a stage Ia tumor. If it had been a recurrence it would have been a stage 4, metastatic, with much less optimistic results.

I was, basically, starting over again. A whole new cancer.

That was more than three years ago and, according to one of the largest studies on the disease, most cases of TNBC recur within the first 3 years. So I’m good. I feel good and people tell me I look good.

I beat the first one and I’m beating the second. Take that, TNBC! Now, just leave me alone.

About 15 to 20 percent of all breast cancers are triple-negative. To learn more about this subtype, its treatments and how it impacts lifestyle, attend our conference, Sharing Wisdom, Sharing Strength September 28 – 30, 2018. To read more personal stories, visit TNBC and Me.