YSC Summit Recap

I just returned from YSC Summit, the only national conference for young women and their co-survivors, in Atlanta. Hosted by Young Survival Coalition, YSC Summit inspires and connects young women facing breast cancer. Why the focus on young women? According to the organization and what I also know personally to be true, the emotional and medical concerns of young breast cancer survivors are often different than those of women over age 40.

IMG_8282More than 250,000 women in the US were diagnosed with breast cancer before their 41st birthday. Approximately 13,000 young women will be diagnosed this year alone. This event not only brings young women with breast cancer together but it features “TED Talk”-style general sessions with inspirational speakers, educational and psychosocial workshops and wellness activities addressing the unique issues that young women with breast cancer face.

This year’s YSC Summit speakers included sex and intimacy experts Sabitha Pillai-Friedman, PhD, and Barbara Musser. The medical updates session were led by: Pat Steeg, Deputy Chief of the Women’s Malignancies Branch in the Center for Cancer Research, National Cancer Institute; Dr. Nikhil Wagle of the Dana-Farber Cancer Institute and Dr. Kimberly Curseen of the Emory University Winship Cancer Center. Conference workshops focused on topics such as dating, family planning, parenting, re-inventing yourself after breast cancer, communication practices, healthy lifestyle changes and coping strategies.

Photo Mar 13, 12 06 52 PMI was especially excited to meet several young women from Fort Worth, TX at this year’s event, since we have recently launched the Fort Worth Young Survival Coalition F2F Network. Each time I’ve attended a YSC conference, I’ve connected with so many inspirational and amazing young breast cancer survivors. This year was no different. I caught up with survivor sisters from past conferences, met up with fellow LBBC Young Advocates, connected with TNBC survivors at the TNBC Foundation booth and instantly bonded with young women new to the “sisterhood.”

This conference is one of the few places where young women with breast cancer can network with others that simply get what it’s like to face breast cancer at a younger age. Between conference sessions and after the day’s events, we have time to sit and engage in deep discussions about life with/after breast cancer. And of course, we spend time not chatting about breast cancer at all – because with this group, there are some things that you don’t even have to say. After conference hours is always a fun time to let loose too! This year, it was karoake.

lbbc-advocatesBeing a 5-year survivor, I still benefit from attending this event, as there are always new developments to learn about and new resources to share. This year, I learned about the organization, Fighting Pretty, founded by a young breast cancer survivor, that helps women battling cancer feel strong, beautiful, pretty and confident. I was also thrilled to learn that AnaOno Intimates will soon launch a new mastectomy bra line with pockets for prosthesis and I met the founder of Hulabelle, a new mastectomy swimsuit line.

While breast cancer in young women accounts for a small percentage of breast cancer cases, the impact of the disease is significant. YSC was the first organization to focus exclusively on the unique issues young women with breast cancer face. Learn more about Breast Cancer in Young Women.

 

Advertisements

TNBC Day

March 3rd is Triple Negative Breast Cancer Day!

TNBC Day

The global movement to raise awareness of triple negative breast cancer is near and dear to me, as this is the type of breast cancer that I faced in November 2010, just days after learning I was pregnant. Prior to my diagnosis, I knew nothing about this disease. I had no idea that despite having no family history, this aggressive type of breast cancer disproportionately affects younger women, as well as those of African, Latina, Caribbean descent and those with BRCA mutations.

As a 2015 TNBC Day Champion, I’ve also chosen to do something positive about triple negative breast cancer. Join me in supporting TNBC Day!

The Power of Social Media

This Facebook post helped save my life.

laura-fbpost-bcam

During Breast Cancer Awareness Month in 2010, my sorority sister, Laura Figueroa, was posting messages like this one to her Facebook page daily in an attempt to reach her goal of raising $1,000 to benefit Susan G. Komen’s Miami/Fort Lauderdale Affiliate. I had never donated to a breast cancer organization before and didn’t personally know anyone directly impacted by the disease.  But I made a donation that week to support my fellow LTA sister and Florida Gators J-School alumna.

It was during that same week that I discovered a lump in my breast one evening as I was changing my sports bra after a workout. At age 30 and with no family history of breast cancer, mammograms were not even on my radar, nor was breast cancer. I often think of how I could have easily overlooked that lump as a serious symptom had it not been for this Facebook post and the subsequent email that I received from Komen after making a donation.

Because of Breast Cancer Awareness Month, I made an appointment with my primary physician. At that appointment, I learned I was pregnant. About a week later, after a breast ultrasound and biopsy, I received the call that would change my life: It’s breast cancer.

Ironically, Facebook is also the platform that I used to break the news of my diagnosis to the majority of my family, friends and colleagues.

diagnosis-fbpost

Read my interview with the Today Show on how I used social media to break the news of my diagnosis.

After my diagnosis, I used a private Facebook group to keep my closest family and friends updated on my treatment and journey. Still, I didn’t know a single person who had breast cancer, much less a survivor who had battled the disease while pregnant.

One night, after my medical team and I had determined the best course of treatment would be to undergo chemotherapy as soon as I entered my second trimester, I sent a tweet out to the Twitterverse: I am pregnant with breast cancer and I am scared. I didn’t expect a response; I simply wanted to vent. But I received a response from a woman in Indiana who had battled breast cancer while pregnant several years prior. That was the beginning of a friendship that would blossom over 2 years before Heidi and I met in person when I was honored as a Pink Power Mom.

It was soon after that connection that I found my way to a breast cancer chat on Twitter that is actually bigger than a mere hashtag: #bcsm. Short for Breast Cancer Social Media, the #bcsm chat is an online network of breast cancer patients, caregivers, physicians and advocates. I tuned in to the #bcsm chat weekly and tapped into the knowledge of women who had navigated through a similar journey. It was through this chat where I first learned about metastatic breast cancer and survivorship issues.

Using the #bcsm hashtag, I’ve connected with other TNBC survivors and women like myself that faced a diagnosis at a younger age. Through Twitter, I have been able to connect with a handful of other women who battled breast cancer while pregnant and have also helped to support newly diagnosed women. I prefer this social media platform to keep updated with the latest research and news related to breast cancer.

Social media has served as a powerful tool in my journey with breast cancer. Not only has it served as a news source, but social media has connected me with some amazing people and provided access to medical experts and answers to many health-related questions. Social media has been my lifeline on days that I just need to vent about the disease and life in general. The connections and knowledge that I’ve gained from social media networks have empowered me to become a better, more educated advocate for my own health and for others.

Miracles Happen

Miracles Happen

LBBC Conference – Shared Experiences

Living Beyond Breast Cancer (LBBC) recently held its Annual Fall Conference in Philadelphia. Thanks to a travel grant from event sponsors, I was able to attend the conference themed “Breast Cancer Today: Individual Treatments, Shared Experiences.” I was also asked to share my own experience on a Triple Negative Breast Cancer discussion panel.

The thing I enjoy most about attending breast cancer conferences is the opportunity to connect with others who share the experience of coping with the disease. This year’s LBBC Fall Conference was certainly no different. However, as I near my 4-year canceversary, I felt very different.

I attended my very first breast cancer conference (C4YW) as a 9-month survivor still undergoing reconstruction. I remember that conference being the first time I connected with other survivors like myself. I remember being surrounded by nearly 1,000 survivor sisters who understood what it was like to fight breast cancer. When they shared their experiences, I felt like they were living my life. I remember seeking out those 5+ year survivors. I wanted dearly to know they existed. I wanted proof that there was life after breast cancer. At that conference, I found hope.

Since that conference, I have attended several others and have made many lifelong connections along the way. So when I arrived in Philadelphia for the weekend, I found many familiar faces in the crowd. For some of us, we picked up right where we left off. For others, we were finally able to put a real face and a real hug to a Twitter handle or Instagram avatar. And for many others, we formed a new unbreakable bond.

As I sat on the TNBC discussion panel and looked around the room, I saw so many faces. Some scared, some filled with worry but also many smiles. As the panelists openly discussed our individual experiences with breast cancer, we drew many comments, questions and thanks from the crowd. It was on that panel that I realized what was different this time. I was now sitting where so many of these women battling this disease aspire to be — on the other side of treatment.

Coming up on my 4-year mark, I was proof that there is life after breast cancer. At this conference, I was hope.

To watch some of the recorded conference sessions, visit LBBC’s YouTube channel.