Tuesday, March 11, 2008

My Stats and My Story

When my gynecologist found my tumor, she said it was small and probably nothing to worry about. This was on a Friday, and my mammogram was on a Monday. In the middle was Mother’s Day. I did not worry about the lump. I figured I was OK.

But the radiologist thought otherwise. She looked at my mammogram, then did a sonogram. She kept poking and probing, talking about some television show—I cannot remember which one—to keep my mind off what it appeared she was finding. She pulled no punches and told me she was pretty sure the pathology report would come back showing “something abnormal.”

That night, I hit the Internet and found a variety of studies that showed that most breast lumps were not cancerous, so once again I decided I was OK. I wasn’t. This was becoming a lousy pattern.

The radiologist called and told me the bad news, but said my tumor was small, telling me, “Patricia, this is not that bad.” I wonder if she has any idea how often I still think of those reassuring words.

I got little reassurance in the ensuing days, but I did get a lot of confusion, starting with the size of my tumor. Breast tumors are measured a variety of ways. First, there’s the size from the sonogram. Mine was 1.5 cm at that point. There’s also the size from the mammogram; mine was 2.1 there. Then there’s the size the pathologist determines after surgery by measuring the tumor itself. Mine was 1.3 X 1.1 cm at that point. This is a big deal, as tumors under 2 cm are considered Stage 1, or early stage.

Then I began meeting with the docs.

At my first meeting with the surgeon, he told me that I had an invasive ductal carcinoma—the cancer had broken through the wall of the milk duct and invaded other tissue. He said I would have a lumpectomy—an elegant lay term for a partial mastectomy—and radiation, unless the cancer had spread. Only if it had spread would I need chemo, he said. At this point I knew nothing about hormone negative cancer, so I asked few questions, and trustingly made plans for the surgery. I somehow knew it had not spread and so I figured I would have the inconvenience of radiation, but that was it.

Wrong again.

The surgeon explained that he would take out only one lymph node—the sentinel node, or the node to which the cancer would move. This is determined by injecting a radioactive tracer consisting of blue dye into my tumor and seeing where it moves. The node to which it heads first is the sentinel node.

He ended up taking out two sentinel nodes, both of which were negative, thank God. The cancer had not spread. He told me this immediately after surgery, while I was still in recovery. Then he quietly dropped a bombshell. He told me he got all the cancer—with a healthy, clear .3cm margin—but that he wanted me to see an oncologist about chemo. “But it has not spread; I don’t need chemo,” I argued. He was adamant. His nurse would set up the appointment.

It was not until my husband and I naively went into the Oncologist Number One’s office a week after surgery that I learned that there was such a thing as hormone-negative cancer and that it is more aggressive than hormone positive. I was estrogen-negative, weakly positive for progesterone and negative for Her2. The oncologist said they treat that weakly positive as negative and that I needed chemo because of the aggressive nature of my tumor.

He said the tumor was poorly differentiated, which meant it could grow rapidly. And he said it was 2.1 centimeters, making it a Stage II rather than a Stage I. He used the size from the mammogram. Had I gone with his interpretation, I would have had four rounds of adriamycin and cytoxen followed by four rounds of taxol, or 16 weeks of chemotherapy.

I had 100 percent chance of losing my hair after two weeks of treatment, he said, but nausea and vomiting are “no longer an issue” because of drugs. He said I would not feel 100 percent normal, but could count on being about 85 percent of my charming self. The taxol, he said, might cause some degeneration of nerves, but it goes away with time. He was so calm and cool and officious, I wish I had asked if he had ever had chemo.

My husband and I left the office in shock. Chemo put an entirely different color on the whole thing. When you lose your hair, you are a cancer patient, with a capital “C.” Without chemo, it is lower-case cancer.

After reeling for a few hours, I decided to get a second opinion, but I was still depending on the advice of doctors; I had not yet done research into hormone-negative cancer. Magically, I ultimately made the right decisions, but I wish I had been better informed from the beginning.

We met with Oncologist Number Two three days later. He looked through the chart and said the tumor was only 1.1 cm—what the pathologist determined after surgery. It wasn’t very big and it had not spread, so it was early stage breast cancer. But it was hormone-negative and therefore very aggressive. “This is a young woman’s cancer,” he said. “We take it very seriously. You don’t get a second chance.” However, because my nodes were negative, he said I would need the adriamycin and cytoxen in a dose-dense regimen every two week, but I would not need the taxol. I would then have radiation.

And he looked at the Nottingham Histologic Score, which was Grade II, meaning it was in the mid-range in terms of aggressiveness. The higher the grade, the more aggressive the tumor: Grade I is slow growing; Grade III is fast growing. I felt a little calmer, knowing I was middle-of-the-road.

I went with Oncologist Two and his regimen, which, I learned through research, is the standard for early-stage node-negative hormone-receptor-negative cancer. So many negatives, and I was trying so hard to be positive.

I had four rounds of chemotherapy—adriamycin and cytoxan—and I did, indeed lose my hair. Three weeks after chemo started, just as Oncologist Two predicted.

But the business about no nausea from Oncologist Number One? Well, we took him seriously, and went out for lunch after the first chemo treatment. I still cannot look at spaghetti with meat sauce without a sense of revulsion. Ick. I learned to eat small, mild meals before chemo and the nausea was better, but I still felt ill the day or two after treatment. I also started visiting an acupuncturist on the day of treatment and that helped the nausea and my well being immensely. I still see her. I think she is magic.

I continued walking for exercise throughout treatment. That, I think, helped the nausea. I worked as much as I could, often at home, and found the frustrations of academic life to be a nice reprieve from cancer treatment. Cancer does put everything into perspective. I had a thoroughly supportive workplace, which was a blessing and, I am sure, helped my recovery.

After chemo, I had 33 days of radiation. Every weekday for six and a half weeks. I loved my radiation oncologist—a truly positive woman—and the technicians, who all had a good attitude and a sense of humor.

I began this adventure May 15 with the mammogram, sonogram and biopsy. I had surgery exactly two weeks later, on May 29. Chemo went from June 16 through July 27. Radiation started August 14 and ended September 29.

On October 7, two weeks after my last radiation treatment, I was hiking in the Colorado Rockies. My longest hike that year was a three-hour trek up to 9,000 feet. As I walked I enjoyed the warm autumn sun, the purple mountains, the orange and gold fall leaves, and I thought of how I loved this part of my world. We walked briskly and I had no trouble keeping up with my husband, brother and nephew, all usually stronger hikers than me. It wasn’t until I reached the top of a canyon and asked my husband to take a picture of me with my still-bald head that I remembered I had just finished cancer treatment. It all seemed like a bad dream. Or perhaps, a good one. I had, in fact, awakened, with energy and sprit and, most important, health.

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