Everviolet Chats: MJ Decoteau, Founder & Executive Director of Rethink Breast Cancer

In the heart of Breast Cancer Awareness Month, it's clear that our community needs more than pink ribbons and emojis – especially those facing treatment amidst a pandemic. Which is why we were thrilled to interview the ever-so-inspiring, MJ Decoteau, Founder and Executive Director of Rethink Breast Cancer. Dedicated to educating, empowering and advocating for young women with breast cancer, Rethink is developing a new program specifically designed to support women of color. To hear more about these new resources, the organization's commitment to Metastatic Breast Cancer (MBC), and learn about their advocacy work for take-home treatments, see our latest Everviolet Chats below. 

How did Rethink Breast Cancer come about and what are your biggest advocacies?

At 22, after losing my mother to breast cancer, I was hard-pressed to find relevant information that wasn’t scary and overwhelming about my own risk factors. I quickly began to understand why so many smart, young people were in the dark about breast cancer – they simply weren’t being targeted. This realization was my call to action. In 2001, Rethink was born putting young people concerned about and affected by the disease on the map, for the very first time.

Now in 2020, Rethink Breast Cancer’s mission is to empower young people worldwide who are concerned about and affected by breast cancer through innovative education, support and advocacy to improve breast cancer services, treatment, education and research for women at all stages of the disease.

What do you think women (and men) should really know about metastatic breast cancer?

We need to underscore the urgency to improve the outcomes for women with MBC. The average survival for women with MBC is only 2-3 years from diagnosis. For me, that stat represents the most glaring unmet need in breast cancer. It’s why Rethink is part of a global alliance determined to help double the median survival time by 2025.

But we also believe the advocacy to make change for MBC cannot lie only with the women living with it.  We’ve launched our MBC Allies campaign, calling on women with early breast cancer, caregivers, friends, family and the public to make MBC count. 

We’ve heard about your advocacy for take home treatments. What are they and what are their benefits?

Take-home cancer treatments (THCTs), or treatments that are taken at home (usually a pill) instead of in hospital (IV). Many of the newest and most effective MBC treatments are taken at home, with more in the pipeline.  But in addition to targeting and treating breast cancer, THCTs keep patients out of the hospital during the pandemic, and can offer patients less travel, more time with loved ones and can save money to the healthcare system.

What breast cancer services would you like to see improved the most?

Our community of young women is very vocal about their needs and something that comes up often is the need for more programming and services more tailored to Black, Indigenous and women of color. In addition, a general comment is that there are many resources and services out there that just aren’t reaching patients at the right time. For example, many women are finding out about breast reconstruction options, fertility options too late or aren’t being asked about sexual and mental health and are missing out on early interventions to address these issues, which really impact quality of life. Health equity needs to be improved so that no matter where you live, you are getting access to the latest treatment information and options. Precision medicine is all about the right treatment for the right patient at the right time and, unfortunately, there are many barriers in our healthcare system that need to be overcome to make this happen.

Black women have the highest breast cancer mortality rate. Can you tell us a little bit about your new program?  What resources or opportunities will you be providing for women of color?

This October, we're launching a new resource for women of color with breast cancer, Uncovered: A Breast Recognition Project, which came to us from a Black woman in our community with metastatic breast cancer. The photo-driven print and digital booklet will focus on the Black breast cancer experience via powerful imagery and unique stories of reconstruction, physical and emotional scars and identity as it relates to Black bodies. It has been designed to uplift Black voices and share photos that honor Black bodies in a beautiful, celebratory way.

What is Rethink Breast Cancer’s Metastatic Breast Cancer (MBC) Fund? How can individuals or corporations help support your cause, and how are the funds allocated?

The MBC Fund was launched in 2019 to address the gaps and specific needs of women with MBC through support and research programs.

Recommendation for allocation of funds for projects related to supporting women with MBC will be made to the Rethink Breast Cancer Board by Rethink staff and our Metastatic Breast Cancer Advisory Board, which is comprised of young women living with breast cancer and caregivers.  You can support Rethink’s MBC Fund here.

(We have an exciting announcement related to the MBC Fund coming soon…stay tuned!)

Amidst a pandemic, has the organization redirected any initiatives or noticed any shifts in the breast cancer world?

Like many organizations, Rethink quickly had to pivot both our offerings and the way we connected with our patient community. Since the start of the COVID-19 pandemic and orders to physical distance, Rethink has been offering women living with breast cancer psychosocial support through Virtual Support Groups. Rethink, together with alum and trained psychotherapist, Shawna Rich Ginsberg, have been navigating new yet familiar territory and providing a safe space to learn, connect and reflect, that’s needed now more than ever.

We’ve also launched a new education series Rethink Real Talk: Ask an Expert. It’s a monthly virtual live Q&A series that helps women get straight to the source and get answers to some of the burning questions young women in the community have. So far we spoken with an oncologist, a physiotherapist, a naturopath and fertility experts.

Please share any events Rethink is hosting or participating in during Breast Cancer Awareness Month, and how our community can participate.

October’s Rethink Real Talk theme is Sex and Body Image. We know a breast cancer diagnosis comes with physical and emotional changes that can leave you with a complicated relationship with your body and feelings of loss when it comes to your sexual identity. That's why we curated a panel of diverse perspectives to help spark an important conversation that challenge the current paradigms of what life looks like beyond cancer – Everviolet’s own, Keira Kotler, was a guest on the panel. Watch it here

Anything else you’d like to share with the Everviolet community?

Most people are aware that October is Breast Cancer Awareness Month, but our community needs more than awareness. We know that this disease doesn’t slow down during a pandemic, and that our work to educate, empower and advocate for young women affected by breast cancer so they can live better and longer, is more crucial than ever. Your readers can help fuel our movement by joining us and supporting our October partners, like Everviolet, to make our work possible year-round.