The “Invisible” Breast Cancer Patients: There Are More Than It Seems

We’ve made such great strides when it comes to breast cancer:  We have better treatments with fewer side effects. We have much-needed funding and dozens upon dozens of organizations dedicated to helping find a cure. And, of course, we have awareness: The entire month of October is bathed in pink; support groups abound; thousands walk in solidarity with signs on their backs proudly exclaiming, “I’m a Survivor!” or “I’m a Previvor!”

But what about those women who are neither?  While we try  to focus on the positive when it comes to breast cancer, the truth is that far too many women do succumb to the disease. In fact, 40,000 people die from the illness each year. So what do we call women who are facing metastatic disease? They are neither survivors nor previvors. And, according to a report in The New York Times by Roni Caryn Rabin, they sometimes feel “invisible” within the advocacy community.

This excellent article explains that the average life expectancy for a person with metastatic breast cancer (meaning it has spread to distant organs from the original tumor site) is slightly over two years. Of course, a person with stage 4 cancer can still enjoy her life, but she often jumps from one medical cocktail to another, constantly seeking the treatment that will help prolong it. Often it’s not a question of if the cancer will kill them. It’s a question of when.

Certainly, awareness is crucial, but while the pink ribbon campaign is typically about “hope and empowerment” as Ms. Rabin writers, those with more dire diagnoses don’t feel like they are a part of it. They, too, are battling breast cancer. They, too, are courageous. But in their cases, it’s sadly a matter of the disease having the upper hand.

Shortly after the release of my book, Previvors, I wrote an op-ed piece for The Huffington Post that somewhat addressed these “us versus them” type of issues. For instance, some breast cancer patients take issue with the words “previvors”  and “survivors” because they feel those words demean their own battle. And the article in The New York Times helps to explain why they might feel that way.

I believe that survivors and previvors deserve their own identity, but maybe we need a different word to describe those who are losing their fight with breast cancer. I don’t know what the answer is. But I do know that we’re all in this together: previvors, survivors, those who are facing metastatic cancer, and those who have lost loved ones to the disease. We need to be sensitive to the fact that we all have different battles to face. And we need to support each other, regardless of what those battles might be.

One Comment

  1. Posted January 20, 2011 at 2:09 pm | Permalink

    “So what do we call women who are facing metastatic disease?”

    How about “Incurable”? Maybe cancer overachievers?

    As one of 155,000 people in the U.S. living with metastatic breast cancer I was so excited to FINALLY see an article about women with MBC.

    Excellent article.

    No one dies from early stage breast cancer. But virtually everyone does from metastatic breast cancer.

    Susan G. Komen? MBC.
    Elizabeth Edwards? MBC.
    My mom? MBC.
    Me? MBC–someday.

    If a woman dies from breast cancer, she almost certainly had MBC.

    There also seems to be the widely held idea that MBC is something that happens to other people. Note that up to 20 percent of the “survivors” of early stage breast cancer will go on to join the MBC ranks. Until a woman dies of something else, there is always a possibility her cancer can come back, even if she was Stage I, II or III.

    Early detection is not a cure. We have more breast cancer awareness than you can shake a pink Kitchen-Aid Mixer at and guess what? In 2011, there is no cure for MBC. It’s treatable but unbeatable.

    Women with MBC are seldom featured. I bet you can’t name a single high profile living woman with MBC. And yet, I bet you know quite a bit about Sheryl, Melissa and Christina.

    My MBC friends are circulating that NYT article to friends and family. This is how I feel, many are saying.

    Think of that—of the 100s of BC articles, books, etc., it’s really only this ONE newspaper article that profiled women who will die with or from this disease.

    Well, it’s a start.

    Kudos to http://www.metavivor.org for their grant to Dr. Danny Welch. And thanks to Suzanne for sharing her story as well as her work with http://www.mbcnetwork.org.

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