Discussing Breast Cancer

I’ve been putting off sharing the details of my recurrence because recurrence itself is so hard to face, even after the fact. I also don’t want to worry anyone unnecessarily … not everyone has a recurrence after an initial bout of breast cancer. Many, many people are lucky that way. I was not. This week I’ll tell you about my recurrence.

After my treatment for DCIS in 2003, as I said before, I went on Tamoxifen and intended to stay cancer free. After all, my breast cancer was Stage 0, my surgical margins were good, my radiation treatments were clinically ‘by the book.’

Good doctors monitor you closely and I did my part by making and keeping my scheduled appointments.

A few months after my treatment (March 2004) I had a clean mammogram. That was a huge sigh of relief — everything looked sunny, not a calcification to be seen. I didn’t have to have another mammo for a year. The weight on my shoulders was lifted. That year was fantastic. My energy returned and physically I felt great.

Mentally, however? I was afraid of recurrence. They didn’t have good data for young survivors — i didn’t want five or ten year recurrence rates, I wanted twenty or thirty year rates and they don’t exist for women under forty. One of my doctors told me that since I was diagnosed, odds were I’d get cancer again in my lifetime. “The good news,” he’d tell me, “is that we’ll be on top of it when it happens.”

That’s such a frustrating concept. After you’ve been diagnosed with and treated for breast cancer, you’re always waiting for the other shoe to fall and hit you in the head. You always expect it, you just don’t know when it’ll happen, so you’re never quite … at ease.

My March 2005 mammogram was different from the previous year, but not suspicious enough to warrant a biopsy. Six months later (September 2006) I had another mammo, no different from the March mammogram so still not suspicious enough.

Both times I felt I’d been given a recess but not a permanent vacation from the worry.

Then came the March 2006 mammogram … and the other shoe finally fell from the sky.

The call to inform me I had breast cancer came in on Thursday, July 17, 2003. But each time the phone had rung between the time I walked out of that hospital door and the time the call actually came in I’d have an adrenalin surge.

The biopsy was positive for intraductal carcinoma in situ. I wrote down the words as the surgeon explained them to me. I knew that carcinoma meant cancer so I stopped hearing what she was actually saying because my head was reeling with that single word. Carcinoma.

I had DCIS. Stage 0 breast cancer. Historically considered ‘pre-cancer’ but now known to be the pre-cursor to a more advanced form of the disease. My surgeon had booked an OR for the following Thursday.

I wrote down as much information as I could. Then, I picked up the phone and called my husband at work. “I got the call,” I told him. “I have breast cancer.” He was speechless, of course. The information is impossible to process. His wife, friend, lover, mother to his children … had breast cancer.

I tried my parents’ house, no answer. My mother’s cell phone, no answer. So I packed up the boys and just started on the half-hour drive to their home. I needed my mother.

My parents phoned me on my cell phone as soon as they saw that I’d called. When I told them the biopsy was positive there was silence on the other end of the phone. After all, I was their baby, their youngest child and I was telling them I had cancer. What words could they possibly use at that moment?

Within minutes (so it seemed) of my arrival at my parents’ house they came home; my husband also arrived at their house (who could possibly work when their spouse tells them they’ve been diagnosed with cancer?).

Together we tried to process the information my surgeon had given me on the phone. I was 100% treatable. I’d most likely need surgery then radiation therapy. But I was 100% treatable. We pondered over the fact that she didn’t say, ‘curable.’

I knew this meant that I wouldn’t be taking that business trip so I called my client and again, there was that silence on the other end of the line.
Apparently shock, devastation and speechlessness are linked in your brain’s processing unit.

Then it hit me hard: if this is how the adults in my life were taking the news, how would I tell my children?

The morning after my baseline mammogram I returned the kids to my moms and returned to the Suite for Women’s Imaging and returned to worrying. It was a busy time for me because I had just taken on a new project for a key client of mine. I had a myriad of details to work out and had a business trip to California to plan.

The technician took a second set of films and asked me to wait while she consulted a radiologist. I didn’t even bother making myself a cup of tea (the fun was over). I was called into a small room. I’m talking small. Maybe sixteen square feet small. Really it was a closet with two chairs and small desk with a light box on the wall. The radiologist placed one of my films on the light box and flicked the switch so that light poured through to illuminate the black and white image of my breast tissue.

He pointed out a small cluster of white flecks — they looked like bitty grains of rice — and called them micro calcifications. These calcifications signified a change in the breast tissue; could have been the result of my discontinued nursing, weight loss or a bruise to my chest indeed. He told me that 80% of the time micro calcifications turn out to be nothing.

It took me a minute to recognize that we were discussing my right breast. The sensation that brought me down this path (the discomfort that had amazingly subsided) was in my left breast. I couldn’t help but think … had I not felt that internal bruise feeling in my left breast … I would not be here. What did that mean? (Another topic to be revisited at a later date.)

The only way to be sure I didn’t have cancer was to schedule a biopsy, which I did asap. I had to meet with a surgeon (I took their recommendation) first: I had two options: Stereotactic (Core Needle) Biopsy or Needle Localization Biopsy. She also agreed that there was a strong likelihood that this was nothing.

I chose the Stereotactic Biopsy. On the morning of July 15, 2003, I headed to Norwalk Hospital. My husband drove, I didn’t wear deodorant, I hadn’t had aspirin or ibuprofen for a week. I was ready. The procedure wasn’t comfortable (another post for another day), but with deep breathing and a surgeon with a good sense of humanity, I endured. Looking back it was nothing, but fear of the unknown is a very real and almost debilitating emotion.

After it was over, I received a phone call from my client … “Hey, Karen. Just wondering if you’ve booked your flight.” I took a deep breath and told her I had, but there was a very small chance I’d have to cancel. I explained what was going on and told her I’d have to wait for the biopsy results. We talked about the fact that this was probably nothing. I’d agreed to call her back after my surgeon called me with the green light.