There isn't one, typical way that a woman gets a clear picture of what she is facing. My story illustrates why we need all the methods of detection, each with its own imperfections.
At the surgical biopsy, my left breast was marked with blue marker, a wire was inserted into the breast guided by a mammogram picture that identified the suspicious area, and a plastic cup was placed over the wire. As I sat in the wheelchair being pushed toward the surgical area, I remarked that I looked Madonna-esque (like the pop star), the way the cup caused the hospital gown to protrude.
Several days later, I pulled over to the side of the road to answer the surgeon's call on my cellphone. The sample showed DCIS (ductal carcinoma in situ). DCIS is often referred to as pre-cancer, irregular cells that may or may not develop into cancerous, invasive ones. I continued on my way to an allergist appointment and cried to my doctor, then I drove to an appointment at my son's school and pretended that life was normal.
When I met with the surgeon, he told me that there was not a "clean margin," no clean area bordering the DCIS cells. This meant that it was likely there was more breast tissue affected, tissue that had not been excised and tested.
He offered me the DCIS treatment options of lumpectomy with radiation or mastectomy (without radiation) and asked me to make a decision. At first all I could think of (or scream) was, "I don't want to die!"
But, after time to reflect, I wondered why he hadn't ordered more tests, what could be going on in the other breast, and wasn't there a gene mutation test I had heard about?
The second surgeon declared that my "dense" breasts (a term I had learned about for the first time from my mammography report) were "a radiologist's nightmare" and made calls to get me in for an immediate MRI ("how will the kids get home from school if I run late?"), which found a white spot one centimeter away from the surgical incision, his nurse told me on the phone I needed an MRI biopsy.
At that point, I sought care close to home in White Plains, where surgeon #3 was the charm. He was surprised that neither doctor had ordered an ultrasound and that the MRI had been ordered without regard for my monthly cycle (the MRI is a not-so-reliable test and highly sensitive to hormonal changes). He wanted to rule out the possibility that there was an invasive cancer (if he didn't find one he wasn't going to biopsy my lymph nodes).
The mammogram had only shown calcifications, now the ultrasound showed three masses that needed to be biopsied (two in the left, and one in the right). But during the biopsy procedure, the surgeon and ultrasound technician were pretty confident that all those were benign, which they turned out to be.
During the procedure, the surgeon asked me questions about my family. I told him that my kids had made fun of me last fall, because I had been lugging around my "bar-mitzvah attache" filled with all the research and notes I had compiled in planning for my son's bar mitzvah.
Who would have guessed that a year later I would be lugging around my "breast cancer attache" with my notebook, my films, and my reports in a brown paper shopping bag?
He waited for me to get dressed and walked me out of the ultrasound room while carrying my jacket and paper bag for me. A benign finding would be great, but would mean I would have to go through another MRI. The waiting, the uncertainty was almost too much to bear. He acknowledged how I was feeling, as if we were moving in slow motion.
I was sitting in the waiting room of my oncologist's office when I got the call that the MRI showed the same white spot as before, approximately two centimeters (but its true size could be measured only after it had been fully removed). If I didn't have the biopsy tomorrow I would have to wait another month, because of the timing of my cycle. I pleaded to be able to have it done the next day.
The MRI is conducted while lying on your stomach and your breasts are positioned over two openings. The radiologist had to get into an awkward position to access the suspicious area behind my areola. When she was done, I was told to get into an upright position quickly, because there is bleeding. The assistant helped me get up and quickly covered me and put her arm around me, there was a palpable gravity in the room. Speaking of "palpable", by this time several doctors had given me physical exams and none of them had felt anything.
The biopsy result: an invasive cancer, IDC (invasive ductal carcinoma). The DCIS had started to turn into a malignancy.
For me, it was a difficult, but clear decision what to do with my left breast—it had to go -- my reasons to be discussed in the next post. But I struggled with the idea of a prophylactic mastectomy on the right side.
Would the results of the genetic testing help me make up my mind?