By the time most of the women at the breast cancer support group meeting had introduced themselves, I realized mine was far from the saddest story in the room. Of the dozen women, four wore colorful scarves or cute slouchy knitted hats to cover their bald heads.
“Hi everyone. My name is Jen. I’m 45, have two kids, and was diagnosed stage one with a 1.5 cm tumor. Part of the reason I’m here is to decide whether I should go through chemo. It would lessen the chance of the cancer recurring by 1.6 percent.”
Two months before, a mammogram had identified a lump in my right breast. My oncologist ordered the Oncotype DX genomic test to determine my recurrence score. The higher the score, the greater the chances the cancer will come back and the more likely I would need to undergo chemotherapy.
I was driving when the oncologist called. I pulled over to hear the good news: “You have a low score of 16 and won’t need chemo. Congratulations!”
I sat in the car for a few minutes, gently closed my eyes, and breathed a deep sigh of relief. Whether it was a clean M.R.I. scan or negative lymph nodes, I was learning to relish any little joys that came my way amid the chaos our lives had become.
I sought to learn more about the tumor test and exactly what my score signified. The TAILORx study, the largest ever breast cancer treatment trial based on over 10,000 patients’ recurrence scores, had just been published, showing that 70 percent of women with my type of early stage breast cancer could avoid chemotherapy.
My score was right on the cusp. According to the study, undergoing chemo would lessen my chances of the cancer progressing to another part of my body, the primary cause of breast cancer deaths, by 1.6 percent.
I respectfully questioned my oncologist’s assessment over email, but in her mind, the slight benefit of chemo did not outweigh the risk of its side effects. She remained confident of her opinion.
I wanted to relish being spared the toxicity and side effects of chemo, but if it could help me potentially live longer, spend more time with my kids, shouldn’t I do it anyway? Or was I insane to even consider chemo if my doctor recommended against it?
Now, in addition to the nightmare of cancer, I had the nightmare of having to make a decision.
Two weeks post lumpectomy, the bruising and swelling were slowly going away. I stopped worrying about recovery and started agonizing about what lay ahead. If there were any benefit to doing chemo to decrease my chances of becoming metastatic, I should take it. I want to be alive when my kids get married and spoil my future grandchildren, even if that means torturing my body for a few months.
My husband, Kevin, a family practice physician, tried to talk me down. “One-point-six percent is insignificant compared to how it could weaken your immune system, cause permanent nerve damage, osteoporosis — it could even give you another cancer or kill you. You should trust your doctor. And your husband.”
I wanted to. But the market researcher in me trusted information. I needed to collect qualitative and quantitative data and analyze which choice I would regret more. Which would allow me to live most fully and take care of the people I love?
At restaurants, waiters try to hide their irritation as I scroll through Yelp reviews on my phone to ensure the most popular dishes are being ordered. My notes on choosing a preschool were so robust I turned them into a how-to book. My newfound research project gave me the opportunity to feel as if I were actively doing something to heal myself.
Each night, once I heard Kevin snoring, I sat up against the headboard, turned on my iPad and lowered the screen brightness. I hurled myself down the rabbit hole of news articles, breast cancer websites and community forums. The TAILORx study was so new, however, there wasn’t much information and no concrete answer.
In my support group, most of the conversation revolved around tips for getting through chemo — the depression, mouth sores, numb hands and feet, and what to do when hair that fell out never grew back. I couldn’t relate and didn’t want to, yet somehow I envied them for being fighters.
One day I read about another test called MammaPrint. At our next appointment, my doctor happily showed me that those results also supported the argument against chemo. Time had run out and that was the final data point I needed. We arranged to start my month of radiation treatment the following week, followed by five years of daily hormone blocker pills. I apologized for second-guessing. She gave me an understanding smile and replied, “Knowledge is power.” She hugged me, said congratulations, and I was on my way. Decision made.
But that weekend, I was set up on a “cancer friend date” with another mom whose kids were similar in ages to mine. Turned out she had a single digit, slam dunk no-chemo recurrence score, but she had insisted on doing three months of treatment anyway. “It wasn’t easy,” she said, “but I wanted to know I did everything I could to be there for my kids when they grew up.”
A few days later, in tears, I woke up my husband to tell him I’d changed my mind. I wanted to ask my doctor to start me on chemo. “The internet says it may already be 19 percent less effective since I’ll be starting more than 30 days after surgery,” I said.
“You know I’m behind you whatever you do, but chemo will affect you physically and emotionally for the rest of your life,” Kevin said. And he reminded me that my first radiation appointment was scheduled for the next day.
For one more night, I cozied up to my iPad reading cancer survivors’ stories. In the morning, I read aloud my pro and con list one last time and headed to radiation.
People with cancer are praised for how hard they fight. There’s a sense that if we don’t take the hardest possible road, it’s the easy way out, and we are less than worthy if we choose it. I had to get past that and be O.K. with my decision, even though it felt like chickening out.
There’s no way to predict if my cancer will come back. But I’m grateful to be present here and now to experience all of what life has to offer — helping with homework, a bowling party for my daughter’s 11th birthday, our trip to Costa Rica.
I will never be 100 percent confident about my decision. But I have faith that forgoing chemo doesn’t mean I don’t care about seeing my kids graduate from college or start their own families one day. It could be the reason I’m able to do those things. I know that I made the best decision I could under the circumstances with the information available to me at the time. Cancer or no cancer, that’s really all we can ever do.
Jenifer Wana is the author of “How to Choose the Best Preschool for Your Child.”
