Not Another Feel-Good Story About Metastatic Breast Cancer

"I could not bring myself to believe that if knowledge presented danger, the solution was ignorance. To me, it always seemed that the solution had to be wisdom. You did not refuse to look at danger, rather you learned how to handle it safely."

The quote above, from Isaac Asimov, is about artificial intelligence, but as a woman with metastatic breast cancer, it resonates with me this month as July 2017 takes on a decidedly "Pinktober" feel, but with a welcome focus on metastatic breast cancer.

A really fantastic study that estimates the changes in metastatic survival rates, among other things, was published earlier this summer, followed by essays about breast cancer "cures" and reflections on past treatments.

That study was followed by one that has raised questions and fears because it looked at whether or not neoadjuvant (that is before-surgery) chemotherapy could lead to metastasis. The study looked at a rodent model and tissue from 20 patients who'd undergone neoadjuvant therapy with three specific drugs. The finding, in a nutshell, appears to be an urge for caution with this type of treatment with the drugs studied. To say it is preliminary is an understatement.

But there's no getting around the fact that these scientists may have found something important for many women who'll be diagnosed with breast cancer in the future. The finding may eventually lead to real, effective prevention of metastasis in a select population of patients. Eventually. Maybe.

The fact that a limited number of drugs were looked at in this study on neoadjuvant chemotherapy is telling. Breast cancer, as much as we want a silver bullet, is a complicated disease. The cancer roaming my body is different from that of someone else given the same HER2+ label, it is vastly different from my friend with ER+ breast cancer, and both of us are different from someone else with triple negative breast cancer.

But that doesn't stop newspapers and magazines and newscasters from looking at these studies and painting a picture of a cure.

Like many — probably most – people I know with metastatic breast cancer, I am an optimist. I believe treatments are improving and that it's probable that someday breast cancer that metastasizes will be a chronic condition that won't shorten anyone's life. That day is not yet here, though.

The hope I have for patients of the future is that of someone who understands that our lives matter, regardless of where we live, how long we live, what treatments we seek and how our friends and family respond. I won't judge you for not wanting to think about the breast cancer you had years ago, but please don't pretend that my diagnosis and that of the 150,000 other U.S. women living with metastatic breast cancer should also be ignored.

In light of the Pinktober cast of this July, there is one fact we should keep in mind: The life expectancy for those who have what is called “advanced” or “stage 4” or “metastatic” remains stubbornly short. Yes, it's longer than it was, but an improvement to an average 30-or-so months of life after diagnosis is not something that anyone confronted with such a prognosis would celebrate.

Much of the improvement in average life expectancy is due to the development, approval and use of two drugs in the treatment of HER2+ breast cancer, a subtype that accounts for about 20 percent of all breast cancer diagnoses, according to the Dana-Farber Cancer Institute. Heceptin and Perjeta have changed the future for many HER2+ patients at any stage, but in the metastatic realm this treatment typically loses effectiveness over time. There are outliers—these are the patients that so many people dreaming of and working toward the cure showcase.

HER2+ treatment improvements are a bright spot in the care for metastatic breast cancer patients. There's a drug, Kadcyla, only used after previous treatment, that also effectively targets HER2+ breast cancer with less systemic toxicity. But those diagnosed with triple negative breast cancer are awaiting a treatment that can similarly extend life. Recent advances indicate that immunotherapy could be particularly effective for this subtype, and researchers at conferences and lectures I’ve attended seem to be united in their desire to find a better future for these patients.

Success does happen, though, and research will continue to change and improve care. I often call myself lucky for many reasons — among them is the fact I am alive at a time when Herceptin and Perjeta can give me extra time that people before me didn't have. Although I am determined to live to see my kids grow, spend additional years with my husband and do the things we all dream of, I know realistically that we can't all live for many years past the average.

Current statistics are not satisfactory: Approximately 40,000 people in the United States die from metastatic breast cancer each year; metastatic breast cancer eventually occurs in somewhere between 20 and 30 percent of patients diagnosed with earlier stage breast cancer; and the life expectancy improvements that “feel-good” stories often mention are measured in months not years.

Glossing over what it means to be diagnosed with metastatic breast cancer serves no one. Doing that can cause us to live with a false sense of security, preventing someone who may die sooner rather than later from making choices she might otherwise make. Equally important, though, ignoring the real lives of those currently diagnosed with metastatic breast cancer can also affect the response of people and organizations funding and conducting research, as well as the public, which can mistake research advances as a cure.

But such information does not have to define how an individual lives her life, which brings me back to optimism. Even though I live with fear, grief, and loss walking alongside me, I look to the future. Being well-informed with knowledge helps with treatment and life plans. Today I waited in a doctor's office, stressed and anxious, to find out if a new place on my body was showing metastasis (it was not), but as I sat there I knew there was still a way forward even if the result had been different. Because I acknowledge the truth about metastatic breast cancer, I can also acknowledge that there is much to be hopeful about. It is nice to daydream about a cure. It is even better to know what life with metastatic breast cancer is and what it could be with more research leading to better treatments.

Journal articles cited:

Mariotto A, Etzioni R, Hurlbert M, et al. Estimation of the number of women living with metastatic breast cancer in the United States. Cancer Epidemiology Biomarkers Prev. 18, 2017. In print June 2017.

Karagiannis GS, Pastoriza JM, Wang Y, et al. Neoadjuvant chemotherapy induces breast cancer metastasis through a TMEM-mediated mechanism. Science Translational Medicine. In print July 2017.