My Story

“So…there’s a nodule.  On your breast.  I am pretty certain its benign. In fact, if this was your first breast MRI, I probably wouldn’t even biopsy it. I would just wait a year and watch it. But, since you are BRCA positive, we need to take it seriously. So let’s do a biopsy”.

Those were the words I heard the radiologist say on April 7, 2017. I was at the place that I had visited 3x a year regularly to get my breast mammograms, ultrasounds and MRIs. I had chosen that particular place because I liked the fact that a radiologist read the films right then and there, so you got the results right away.  Why did I get so many scans in the first place? Because I am BRCA positive.  Let me go back a bit…

In 2002, my mom was diagnosed with ovarian cancer. It was a scary time. Ovarian is known as a deadly cancer and we were so lucky that it was Stage 1 when they removed it. She didn’t even need chemo. My mother was definitely one of the lucky ones. While she was being treated at Moffit Cancer Center in Tampa, FL the oncologist told my sisters and I about this new test called BRCA. It was a simple blood test that would tell you if you were a carrier of the BRCA gene. He said “after you have your kids”…you should get tested and if positive, have your ovaries removed.  At the time I was single and childless, and I filed the information away.

After my second child was born in 2008 I got tested for BRCA and found out I was positive for BRCA2.  At first glance, the risks sounded pretty bad, but when I sat down with the genetics counselor, for my specific mutation the odds looked pretty good until I got into my sixties.  For the time being, I decided to do “surveillance”, which included mammograms, MRIs and blood tests.

After I had my third child, I sat down with the genetics counselor and looked at the numbers again.  I still thought my odds were pretty good.  Ovarian cancer was the scary one, because its so hard to detect.  But breast cancer…well, if anything comes up we will see it and get it early with all the “surveillance” we are doing.

After a couple years I ended up getting my ovaries and tubes removed as a preventative measure to decrease my odds against getting ovarian cancer.  But the recommendation to prevent breast cancer seemed too crazy to me…get a double mastectomy just as a preventative measure?  Chop off body parts “just in case”? I couldn’t wrap my brain around it.  I had three young children, and its a huge and risky surgery.  I figured I would just do the surveillance and revisit the idea of surgery again at age 50, since my odds increased as I got older.

Earlier this year, my husband said “Maybe we should just do the surgery now. You are almost 47…you are healthy, we have good health insurance. The kids aren’t babies anymore. Why wait until 50?” He was right. I was considering it.

Then…the nodule. The radiologist did not think he would be able to see it on the ultrasound. And he said it would be at least a week or two until we could do a biopsy since he was so booked up. I convinced him to just do the u/s right then and there to see if we could spot it.

Looking back, once we did the ultrasound, he never said the word “benign” again. And suddenly, after he saw the u/s, something opened up for a biopsy that day. When you are waiting for results, you replay every word the doctor said, every expression from the technician over and over.  On about day 4 of waiting, I realized that everything changed after we went in that ultrasound room, and I just knew. Once he saw it on the ultrasound, he knew it was cancer.

I got the call when I was at the mall with my kids.  We had just had tacos at the food court, and we were shopping for new sneakers. I had been waiting by the phone all day. I kept checking to make sure my ringer was on.  Trying to distract myself with work, I sat in a coffeehouse but couldn’t do anything except research pathology reports and how to read them.  I took copious notes so I would know what to expect.

When I got the call it was April 11 (4-1-1 as my sister noted). I quickly left the shoe store (the kids safe with my husband) and hurried down a corridor for some privacy.  I could hear background sounds. The radiologist was out to dinner, I think.  He asked how I was feeling from the biopsy and made a joke about how he waits to call people until they are feeling better.  I think right then I knew. If the news was good, he would have told me right away. Put me out of my misery.  “So, this is the real deal,” he said. “Invasive Lobular Carcinoma”. He said it was low grade, at a grade 1 (he was wrong, when I got the report it was actually a 2).

 And that was it. With one phone call, my life had changed forever.  I knew things would never be the same.

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