Tumorous: To Chemo or Not to Chemo

Juliet Disparte makes her first life-or-death decision.

Illustration by Rebecca Elves

A week or two after my mastectomy, I had my first meeting with my oncologist. My mom, dad, and husband all accompanied me to the appointment. After sitting in the waiting room for more than an hour past my appointment time, we were finally led back into a small but comfortable exam room, decorated with dozens of gorgeous landscape photographs and coffee table books about baseball and coral reefs. (We would later learn that my oncologist is also an accomplished photographer.)

Ten minutes later, a tall, white-haired, bespectacled man with bushy eyebrows and a tweed jacket breezed in. I liked him instantly — he seemed warm and professorial, like Dumbledore or Gandalf.

He shook hands with everyone in the room, then looked at me over the top of his glasses — he does this quite often — and said, “You’re too young to be here.” We all laughed nervously, and he smiled. 

Then it was time to deliver the news we’d all been waiting anxiously to hear: the pathology report. After my mastectomy, my surgeon had sent all of the tissue she’d removed to a lab. The lab analyzed the tumor and my lymph nodes, and also looked at six other suspected tumors to determine whether the cancer had already begun to spread.

The first piece of good news was that my tumor was smaller than the MRI had suggested. Tumor size is one factor affecting what stage my cancer was — the larger it is, the more advanced the stage of cancer. Mine was on the larger side of small, if that makes any sense — it was 3 centimeters across, which is right on the border of stage 1 and stage 2.

The next piece of good news was that the two lymph nodes my surgeon had removed were completely clear of cancer cells, meaning it was unlikely that the cancer had already started spreading to other areas of my body.

But perhaps the biggest relief of the day was finding out that the other six suspected tumors were, in fact, nothing at all. All of this good news painted a more complete picture of the road ahead of me: I was, as my oncologist announced, “a clear-cut stage 1.” As such, I had an extremely good chance of surviving and an extremely low possibility of recurrence later in life. I beamed around the room at my parents and husband with happy tears in my eyes.

After giving us a few moments to compose ourselves, my oncologist began to outline my options for treatment. Despite my overwhelmingly encouraging prognosis, I would still need to undergo standard cancer treatment to ensure that the cancer didn’t spread or recur. It’s not enough to remove the tumor: all traces of any malignant cell must be obliterated, by chemotherapy, radiation, hormone therapy, or a combination of all three.

Most of us are familiar with chemotherapy. We’ve seen the bald, pasty people walking around with scarves on their heads; we’ve seen the movies with chemo patients vomiting violently; we’ve seen that episode of Sex and the City where the girls toast Samantha with popsicles while she’s getting a treatment. Reduced to its most basic idea, chemotherapy is poisoning all the fast-growing cells in the body. Chemo casts a broad net: cancer cells grow quickly, but so do the cells that give us hair, fingernails, and immunity from germs. So while chemo kills the cancer, it also kills all those other types of cells too, and increases the risk of becoming seriously ill with the flu, pneumonia, and other common ailments that, for a healthy person, would mean a few mildly unpleasant days off from work.

Radiation is also a very common cancer treatment, and has been for decades. It’s commonly administered on a daily schedule for about six weeks. Nowadays, a radiation oncologist creates a computer model of the tumor site, and during the treatment a very precise beam of radiation is aimed at that area, killing all the cancer cells that may remain. In many ways, radiation is not as unpleasant as chemotherapy, but in some patients, it causes severe burns and permanently damages the skin.

Since I’d had a mastectomy instead of a lumpectomy, radiation was deemed unnecessary. With a lumpectomy, there’s a chance that a few stray cancer cells were left behind in the body, and radiation is one way to ensure that those cells are killed before they can spread. With a mastectomy, the chance of leftover cancer cells is smaller. So: no radiation for me, which also meant that my reconstruction options were still wide open.

A third, lesser -known type of treatment for breast cancer is hormone therapy. Some tumors, like mine was, are strongly hormone-receptor positive, meaning that the tumor feeds on hormones in the body. As such, one very effective method of treating these tumors is to shut down hormone production for a period of time. As recently as the ‘70s, the only option for shutting down hormone production was to remove the ovaries — a very effective treatment, yes, but a permanent one.

Thankfully, there are now drugs that effectively shut down a woman’s hormone production in fully reversible ways, and studies have shown that halting hormone production for a period of five to ten years is all that’s needed to prevent the cancer from coming back. One powerful and very common drug is called Tamoxifen, which, in a sense, prevents cells in the body from taking up hormones in the bloodstream. Cells that feed on hormones, such as hormone-receptor positive cancer cells, are essentially starved to death, then flushed out of the body via normal waste processes.

My surgeon had already warned me about the probability that I’d have to undergo hormone therapy, so I’d had some time to fit my head around the idea that I would soon be in chemically-induced menopause and unable to have children for the next half-decade. My oncologist confirmed in that first appointment that I would definitely have to undergo hormone therapy. Because I was so young and at the peak of my hormone production, he wanted to try a combination of Lupron and Tamoxifen — the Lupron to halt the production of hormones in my body, the Tamoxifen to stop my cells from taking up hormones already floating around in my bloodstream. It sounds like overkill, and in a sense it is. Many, many patients are treated with Tamoxifen alone, with positive results. But my oncologist worried that my body would try to counteract the Tamoxifen by increasing hormone production. So: monthly shots of Lupron on top of the daily Tamoxifen pill, for at least five years.

I’d always hoped to have my first child before I turned 30. In fact, the only lasting goal I’d ever set for myself was to become a mother, hopefully to a little girl. Even in my teens I loved to imagine a tiny, delicate version of me, an impish fairy princess in a pink tutu, a blank slate I’d teach all about feminism and Shakespeare and love. To have that dream postponed by cancer was devastating. Moreover, around the same time I was learning that I would be unable to have children until well into my 30s, my best friend learned that she was pregnant with her first child, a daughter. I tried my best to be happy for her and take part in her joy, but it was heartbreaking at times, watching her rub her growing belly and exclaim how big her breasts had become. My rational brain understood that her pregnancy was not an insult to my own deferred plans of motherhood, but it hurt my heart nonetheless. It took some time, but I came to view the five years to come as time I could use to travel, eat out at fancy restaurants, live selfishly, and save money for a big house I could fill up with a hundred children once the hormone therapy was finally over.

That left the question of chemotherapy. My oncologist had sent my pathology report to a fancy actuarial firm, which looked at all of the data surrounding my case and all the data currently available about cancer in general, to determine the exact odds of survival, spread, and recurrence I faced. The actuarial firm sent back a report detailing my exact percent chance of survival under a number of conditions. The main purpose of this report was to help quantify the benefits I might expect from chemotherapy, which is itself a difficult ordeal with its own risks.

Before we got the report back, we knew that my particular kind of cancer had an extremely low chance of recurrence — less than 15%. These are already very good odds, as far as cancer goes. While we waited to hear the results of the actuarial report, I told myself that if the benefit of chemo was determined to be a 5% improvement in my odds, I’d go ahead with the chemo as soon as possible.

As it turned out, the number crunchers determined that chemotherapy would improve my odds by 1-2% at most, and that wasn’t accounting for the risks associated with chemo. With this in mind, my oncologist gave me the option of choosing for myself whether to go through with chemotherapy.

My oncologist gave me one week to think it over, but before he sent me home, he gave me some framework for thinking about my decision. Because I was so young, he said, many oncologists would push me to do chemo just so we could say we’d done everything we could to get rid of my cancer. Then he put his hand on my shoulder and told me that if I was his own daughter, he’d tell me not to go through with it. In his mind, the benefit wasn’t worth the cost. But, he added, at the end of the day, I had to be able to look at myself in the mirror and feel like I’d made the right choice. If the cancer came back in five or ten years, would I regret not doing chemo the first time around? On the other hand, he told me to also keep in mind that chemo was by no means an insurance policy — even with chemotherapy, the cancer could still come back. To use one of his favorite phrases: sometimes it’s just the mystery of life.

This was the first true life-or-death decision I ever had to make. On one hand, I wanted to do everything in my power to get rid of the cancer once and for all. On the other hand, I really, really dreaded the well-known side effects of chemotherapy: losing my hair, the soul-crushing fatigue, the chance of serious complications like pneumonia, heart problems, and infertility. I went back and forth like this for a week, discussing it constantly with my husband, my family, and my friends. In truth, I could hardly think of anything else. Almost everyone encouraged me to skip it, considering my prognosis was already so encouraging. But I still waffled. After a few days, my oncologist called me to see how I was getting on, and I told him I was still struggling to decide. He offered to take an informal poll of the other oncologists in his practice and call me the next day with their opinions. I gratefully accepted his offer, and when I hung up, I decided that I’d accept the consensus.

The next day, as expected, he called back to say that of his six colleagues, only one voted that I should undergo chemotherapy.

That decided me. No chemo. I could hear the smile in his voice when I told him my decision. I felt like I was taking a path from which there could be no return, but I vowed not to look back.

Illustration by Rebecca Elves

Juliet Disparte lives in Seattle, where she works with books and goes to the doctor. For more about her adventures as a cancer patient, visit her blog, Tumorous. Follow her on Twitter.