From Sidewalks to Science: An On-Route Look at Komen’s Research with Dr. Maria Soledad Sosa

Opening Ceremonies

Dr. Sosa, can you tell us a bit about what led you to do breast cancer research?

My mom was diagnosed with ER+ breast cancer 18 years ago. Two years ago, her cancer returned and she needed a second round of treatment. Fortunately, she is doing well. My personal experience with this disease greatly impacted my decision to work in this field, and inspires me every day as I work to make an impact in breast cancer research.

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On the Route

Since we’ve got some time, could you tell us a bit about your current research?

Metastasis (or the spread of breast cancer to other organs) is what kills people with breast cancer. My research is aimed to avoid metastasis before it even begins by targeting the “seeds” of those metastases. These seeds are named DCC (disseminated cancer cells) and are “asleep” in the body, and can be found in important organs like the liver and bones even before a primary tumor is detected. But something causes them to wake up and become aggressive. I believe if we can figure out how these DCCs behave and spread, we might find strategies to eliminate them before they reactivate and form metastases.

At Camp

Now that we’ve made it “home” for the night and are enjoying the support of our crew, can you tell us about how your work would be affected without Komen funding?

Komen funding is imperative to my research. With Komen’s support, I can look for ways to keep these dangerous DCCs “asleep” so they can’t grow and become metastatic tumors. It also allows us to find ways to eliminate DCCs while sleeping. My hope is that this work could someday lead to a cure for metastatic breast cancer.

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Day 2

What would you say to somebody who’s just been diagnosed with breast cancer?

My advice to people would be to have hope and be diligent about your own care. People with no sign of breast cancer should continue to follow-up with their doctor, follow the doctor’s recommendations, and continue to get screened every six to 12 months after treatment has stopped. It was a follow-up screening that helped my mom detect her breast cancer recurrence early. Typically, after a person is treated for breast cancer they are considered to have no sign of breast cancer. However, some people may have DCCs in vital organs that are “asleep.” They could stay like that for years — even decades in the case of ER+ BRCA patients — so it’s important to understand that risk and be proactive about screening. Early detection and follow-up could save the life of a person with no evidence of disease.

Cheering Station

Look at all of these enthusiastic supporters out along the route! Tell us about how you are involved with Komen outside of the lab.

I’m excited to be one of four Komen-funded grantees selected for the Metastatic Breast Cancer (MBC) Research Grant crowdfunding opportunity, where anyone can donate funds to support a research project or researcher of their choice. You can learn more about my story on the Komen Facebook page and donate directly to my Komen-funded MBC research project here!

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Closing Ceremonies

Thanks for walking with us, Dr. Sosa. One final question, in working with patient advocates, how have they impacted your research by bringing the patient perspective?

Sandra Spivey is the patient advocate for my grant, and was so helpful in developing the Letter of Intent and grant proposal. She is very supportive, giving me feedback on how to highlight the patient perspective. I was amazed by her energy and passion. Even when she got sick, she kept working and sending me comments for this grant. I really appreciate all her help, and I am sure she will have a positive impact on my research.

Dr. Maria Sosa is an Assistant Professor at Icahn School of Medicine at Mount Sinai and you can donate to her research project directly through Komen’s crowd funding web page. Since 1982, Susan G. Komen has funded $956 million in breast cancer research, second only to the U.S. government and more than any other nonprofit in the world. Learn more here.

Pit Stop

Three things to know about Dr. Sosa:

  1. I like dancing. And as an Argentinean woman, I dance tango!
  2. In my free time, I love to paint
  3. My family enjoys being outside and being active — doing things like hiking, kayaking, and swimming.

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Grab and Go

Here are three ways you can use this information to help reach your 3-Day fundraising or recruiting goals:

Sample Tweet:

Having seen the effects of breast cancer in her own family, Dr. Maria Soledad Sosa is now conducting research aimed to avoid breast cancer metastasis before it even begins! Learn more about her research here:

Sample Facebook Post:

Having seen the effects of breast cancer in her own family, Dr. Maria Soledad Sosa is now conducting research aimed to avoid breast cancer metastasis before it even begins! Komen funding has been imperative to her research, and she hopes to one day find the cure for metastatic breast cancer! Learn more about her work here:

Sister, Sister: Meet Angela and Shelly

The bond between sisters is truly unique and special, but the bond between “Titsters” is even deeper! Just ask Angela and Shelly, a sister duo who are part of the 3 Day family. Angela is currently battling breast cancer, and Shelly walks for Team Titster in the Twin Cities 3-Day in her honor.

From a young age, these two were joined at the hip, which meant Angela getting all her hair cut off when Shelly wanted to play “beauty parlor” or putting on plays and concerts together in their neighborhood. These “Titsters,” Angela’s childhood name for her sister, have been there for each other through it all.

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That journey and support also includes Angela’s ongoing fight with breast cancer, one that Shelly has been a part of since Angela’s diagnosis. Angela was initially diagnosed with cancer when she was seven months pregnant, and her sister “was there immediately to ensure she was there for the birth of my baby girl and to hold my hand during my first chemotherapy. During that chemotherapy, all we did was laugh at videos, reminisce on memories, and I think about that more than being sick after the treatment.”

“After I completed my treatment after my first round of breast cancer, I went to a pretty dark place. The mental and physical struggle after treatment can be more challenging than anything. Woman and men feel more alone than ever. They have constant help, messages, and support during treatment, but what happens after is way more crucial. During treatment, we are in survival mode and cannot fully comprehend that we are going through cancer. Once treatment is done, the messages and help dwindle but the pain is still there. Our body is adjusting and still combatting the toll of chemotherapy, surgeries and radiation. Mentally, we never recover. The constant thought of recurrence always lingers and life is never the same. At the same time, we gain strength in a different way and look at the world and see that life is a gift. We cherish memories differently, we see the kindness of family and our community, and know that every day counts.”

Angela’s treatment will continue for the rest of her life, as she was diagnosed with Stage IV metastatic breast cancer in January of 2016. Stage IV research made up nearly 40% of Susan G. Komen’s overall research investment in 2016, with more than $166 million in funding for over 400 research grants and more than 40 clinical trials focused on metastatic disease to date. Aside from research and monetary support, Angela says she is constantly amazed by the support she receives from her family and even the community at large.

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“What is so enlightening with all these clinical trials is that everything is so new at this point. And it is scary regardless, but what I like to tell people is that every day is a gift, but also a battle. Cancer is not going to control my life. It’s always going to be a part of me, but it does not define me.

“I’m also confident that I will live my life to inspire people and show people that despite being diagnosed with cancer, it doesn’t define you. I keep a happy journal, and at the end of every day I write my favorite part of the day, whether it’s a wonderful moment with my kids or a great conversation with my sister.”

3day20153Angela also credits Shelly as her rock, even from states away.

“The bond I have with my sister has helped me tremendously with this struggle and she truly showcases the bond that sisters have. She was there to comfort me and help me understand this it’s okay to still cry, but more importantly to laugh. We live in different states and I know that signing up for the 3-Day was just another way to show that she’s always there to face my battles with me, even if we cannot do it together.”

First day of chemo

Part of Shelly’s support has come through her involvement in the 3-Day, which began as a crew member and has continued as a walker and fundraiser for the team she formed last year, Team Titster. Her first year on the 3-Day was a monumental one.

“When I signed up to be in the crew, part of the sign-up mentioned possibly being a part of the Opening or Closing Ceremony, speaking and carrying the sister flag,” Shelly explained when talking about speaking at her first walk. “The day before the walk at Crew Training, I met a bunch of very friendly, fun gals, who when I spoke on stage the next morning, cheered me on, even though I was nervous, and even though I was a stranger to them up until the day before. That has been my experience with everyone connected to the walk. Just good people.”

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For her second year with the 3 Day, Shelly took to the trails and walked in her sister’s honor.

“When I decided to walk the next year, I was a little intimidated by the fundraising. But I found that when I reached out to my network to let them know why I was walking, and asked them to consider donating, people were more than willing to support me and Angie and the cause. I also found that almost every one of them had a connection to breast cancer. That alone is sad, but it motivated me even more to walk for those who also had loved ones battling or had battled the disease.”

Shelly helped her fundraising cause by casting a wide net for her initial email ask with a link to her page, along with a write up about Angela and a picture of “my little sister hero.” She also writes a 3-Day blog and shares that along with thank you cards to all her supporters to help them feel like they were there for her journey along the 60 miles.

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When she started Team Titster in her third year on the 3-Day, Shelly expanded her fundraising email list and worked on her social media to raise even more. She targeted her competitive spirit and eventually raised more than $2,000 more than her first year. She was also the #7 Top Fundraiser for the Twin Cities 3-Day.

This success is no surprise to Angela, who has always been inspired and supported by their sisterhood.

“Shelly has always been my role model, and is someone that I’m inspired to be like. She is always the first person I want to talk to when I’m having a bad day, but more importantly, I want to talk to her in my great days.”

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The love is certainly mutual, with Shelly calling Angela a super hero.

“Angie is small in stature but big in personality, perseverance and mostly in heart. She is feisty and fun, outgoing and stubborn, and those are all things we have in common. […] I realize that I have the best sister in the world. She doesn’t judge me, she’s been there for me when others have not been, and I am so proud of her in every way possible. Angie is my heart.”

That heart is going to finally experience the 3-Day for the first time this year. Angela will be making the trip from Chicago to the Twin Cities 3-Day in 2017 to cheer on Team Titster, which Shelly hopes to grow this year as well.

“I’m excited to be there the first time to cheer on my sister and Team Titster!” Angela enthuses. “I’m also happy to be able to volunteer and see the 3-Day. I’m thrilled and a bit nervous for the emotional experience but more importantly, I can’t wait to see and listen to the inspiring stories, and to hold the hands of Team Titster and fellow walkers.

“I know this walk means a lot to Shelly, and I know that every mile she walks, she truly is walking in my shoes to take some of the pain away. I’ve always looked up to my sister. She has more determination, heart and spirit than anyone I’ve ever met. I’ve also come to realize that those qualities are what inspires me to fight harder every day.”

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Shelly echoes that determination, saying that the 3-Day is “emotional (lots of crying, both happy and heart wrenching), challenging (walking and training to walk 60 miles is no easy feat), and unforgettable (experiences and memories that are priceless and make you want to come back).”

Both Angela and Shelly will continue to come back as walkers, volunteers or supporters, until a cure is found.

Sticker

“There is still no cure for breast cancer,” Shelly states simply. “That in itself gives me purpose and determination to keep doing the walks. My favorite button on my 3-Day water pack is ‘Every Blister Saves a Sister.’ I am prone to blisters, no matter how much training I do, (last year, I had 11 by the end of Day 3) so walking until there is a cure is something I feel like I can do, and will try to keep doing until there is no more breast cancer. Blisters do not hurt, physically or emotionally, as much as cancer does. And of course, my sister inspires me, not just to do the walk, but she inspires me every day.”

The power of sisterhood on the 3-Day is real, and every step makes a difference.