Judy Zwillenberg: Insights from an LBBC Intern – Part 2 of a 3 Part Series

The staff here at Living Beyond Breast Cancer is excited to have many new faces and strong minds in the office, with a special appreciation going out to our interns. In this second installment of her three part series, intern Judy Zwillenberg shares what she has learned while researching triple-negative breast cancer.

As an intern in the Education Department at LBBC, I have been assigned a variety of projects pertaining to different groups of women with breast cancer. For this blog post, I would like to discuss my research on triple-negative breast cancer (TNBC) and the projects associated with it. Similar to my work on the Young Women’s Initiative—which I discussed in my previous blog—I was asked to search for articles focusing on the quality of life for women diagnosed with triple-negative breast cancer. More specifically, I attempted to find out if women with triple-negative breast cancer identify themselves as “different” from other breast cancer survivors, and if any articles addressing psychosocial issues for women with TNBC existed. Unfortunately, there was not a lot of information available on those topics since, as expected, the medical world primarily discusses treatment options. Nonetheless, I read a plethora of articles and learned quite a bit about triple negative breast cancer.

To explain it simply (which, in all honesty, is not that simple), TNBC is a type of breast cancer that lacks estrogen receptors (ER), progesterone receptors (PR), and human epidermal growth factor 2 receptors (HER2). Because it does not have these three receptors, it is aptly named “triple-negative.” The reason why this is especially relevant is because many breast cancer treatments work by targeting ER, PR, and HER2 receptors. But, since TNBC does not have these receptors, other treatment methods have to be used. Many of the articles I found addressed this treatment dilemma, as well as provided me with an extensive background for my next project connected to triple-negative breast cancer: an environmental scan.

For this project, I looked through the websites of many organizations known to provide some resources to women with triple-negative breast cancer to see what specifically they have available. I found 14 organizations, and of those I categorized them according to what types of services they advertise. 11 of the 14 groups have an informative section on their site devoted to triple-negative breast cancer; however, most are brief and provide very little information. In fact, the majority of groups outline treatment options or a simple overview of triple-negative breast cancer instead of focusing on an in-depth explanation of the cancer, symptoms during treatment, and life as a survivor. Only 4 organizations have PDFs or publications available which extensively detail TNBC: CancerCare, Triple Step Toward the Cure, and LBBC and TNBCF jointly compiled the comprehensive “Guide to Understanding.”

From the environmental scan, I also found that not many organizations hold conferences or informative workshops for women with TNBC. This is somewhat understandable, seeing as not enough is known about triple-negative breast cancer, and it is difficult to provide information when there isn’t much available. However, this doesn’t explain why there are very few online or in-person support groups for women coping with TNBC. Even without up-to-date information on triple-negative breast cancer, organizations can run support services so women can find solidarity among others coping with triple-negative breast cancer. Unfortunately, this does not seem to be the case in the TNBC world.

This may seem disheartening, but it gives organizations like LBBC an incredible opportunity. We can work to fill this void, and provide women affected by triple-negative breast cancer with services they need and deserve.

Judy is a rising sophomore at Cornell University as a Biology and Society major.You can find more information about the triple-negative breast cancer at the Living Beyond Breast Cancer website. Come back next month for another peek into Judy’s work here at LBBC.

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4 Responses to “Judy Zwillenberg: Insights from an LBBC Intern – Part 2 of a 3 Part Series”

  1. Amy Says:

    good job, Judy!

  2. Pink Kitchen Says:

    Judy, thanks for doing this research! I’ll be tweeting this. Would love to see a conference specifically for TNBC.

  3. Tiffany Says:

    Thanks Judy. I am TNBC survivor. I would love to start my own TNBC group here in Maryland.

  4. Meg Says:

    Judy, my support group has both + & – members. Our leader is a 22 yr survivor of triple negative breast cancer. I am at the two yr mark and there are several trips in between.

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