“Of all times to proactively share your data, this is the time to do it,” remarked Ellen Goodwin when she spoke on her choice to participate in Komen’s ShareForCures breast cancer registry. Former CIA officer turned business founder and breast cancer survivor, Ellen is a testament to resilience, empowerment and the transformative potential of sharing health data to find cures for breast cancer, faster.
Ellen had her yearly mammogram in October and was told she needed to come back in for further testing. It wasn’t until December when they could get her in for her follow-up, a diagnostic mammogram. From there, she quickly had an ultrasound and biopsy to officially determine a diagnosis, but that was just the beginning.
On a New Year’s road trip with her family, Ellen got the call that would change everything. A call that opened so many questions while giving the answer she was hoping she wouldn’t hear. “I have cancer,” is what she thought in her head, knowing that saying those words out loud in a packed car on the way home from New Mexico with her family and daughter’s friend, would open a conversation she was in no way prepared to have.
“The thing about breast cancer compared to some other cancers,” Ellen said, “is that you, as the patient, have to make so many decisions and fast! It can be extremely overwhelming because there are all of these questions you don’t feel qualified to answer coming your way.”
After a series of indeterminant contrast mammograms and multiple rescheduled lumpectomies, Ellen was told there was one machine where she resides that could do a contrast-guided, double biopsy MRI. While this determined that her right breast was clear, it also showed some areas in her left that could cause her to need additional surgeries after the lumpectomy if there weren’t clean margins after the first.
“What was planned to be a 1 cm lumpectomy transformed into a bilateral, skin-saving mastectomy in the blink of an eye,” Ellen recalls thinking back to her breast cancer journey. “I ultimately chose to have a double mastectomy,” she started. “Though we very clearly established nothing was happening on the right side, I had a lot of reasons for my choice. Everything from how I see myself to how the follow-up care and preventive treatment moving forward would be different on both sides of my body.”
Over the next few months, Ellen kept her diagnosis relatively private. She had a small group of trusted family and friends that she opened up to while undergoing her testing and surgery, including a best friend who is a survivor of the exact same diagnosis. Another confidant was her business partner for her company, Artifcts, that exists as a social-archive platform that’s a space to archive the who, what, when, where and why of family heirlooms or special moments that matter to you. After her mastectomy, she shared the news with the rest of her family and friends and then publicly shared her diagnosis through her company’s social platforms.
“We need more accurate family histories,” Ellen said. “I didn’t know my grandmother also had a mastectomy until I got a card from my aunt after I shared the news with my extended family. I had genetic testing done and was negative for the genes linked to breast cancer. But the geneticist showed me this ‘30%’ familial relationship to breast cancer in a pie chart and I realized that’s where I fit in. It is so important to be open with the people who share our genetics about our health history. It impacts so many generations to come.”
When Ellen was diagnosed, she was told she had “well-behaved breast cancer.” That self-declared “privilege” is what prompted her to turn to Komen, an organization she’d been familiar with and even volunteered for the week before having her mammogram that changed everything, and say, “how can I help?”
When asked why she felt comfortable participating in ShareForCures, she explained that we live in a world where we give out our data every day, but providing her medical records for this important research would be an instance where sharing her information could make an impact. “If you want to actually make a difference and it requires sharing some health data to do so, you want to look at it from the perspective of ‘do I trust this organization?’” Ellen remarked. “For me, there isn’t a better place to start than Komen. I trust them and know they have the connectivity to give me hope this information will be harnessed for the broader good.”
“We need to share our information to help one another. It’s the easiest thing we can do.”
With her own company, Ellen makes sure every post a user shares are private at their inception. “It’s up to the user to make it public or share it with others. Giving people the choice to keep their information, private or not, is key,” she said. “With ShareForCures, I had a choice to share my breast cancer information and hopefully help others because of that, so it was an easy decision.”
Ellen remains steadfast in her belief that with the right amount of diverse information collected, we can find the cures for breast cancer, and she is doing her part to make sure that happens. In her own words, “We need to share our information to help one another. It’s the easiest thing we can do.”
Through her advocacy for ShareForCures and commitment to empowering others to prioritize their breast health, Ellen encourages others to understand the potential of collective action fueled by shared health information. As she continues to navigate her experience with newfound perspective, Ellen remains steadfast in her belief in the power of data to drive positive change and ultimately transform lives.
Watch Ellen’s ShareForCures collection kit unboxing below:
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.
From 3/15/2024 to 3/15/2025, Artifcts, Inc. will donate to Susan G. Komen $23.80 of the purchase price for each Artifcts Unlimited Membership sold and $9.00 of the purchase price for each Artifcts Lite Membership sold. Artifcts, Inc. will make a guaranteed minimum payment of $2,500 to Komen.
