The Perfect Way to Connect from Home

Nine months ago my life was forever changed when I got the phone call confirming all three breast biopsies were malignant. A few days later, a pet scan confirmed that my breast cancer had spread to my liver. In that moment, my world turned upside down and my perspective on life was forever changed.

Tami Bowling w/ daughtersI was looking for a way to connect to other young women and was so happy to learn of the YSC Online Video Support Groups. As a 42 year-old mother of two young children, it’s hard to get a babysitter and leave the house, so this was the perfect way to help myself right from my home. It was so helpful to see the faces of the other participants while relating to their struggles. Each week, the moderator covered different topics and the participants offered different perspectives. It was helpful to know that I was not alone and that there is a way to live happy, despite breast cancer and metastatic disease.

Here are a few key takeaways from the sessions I attended:

 – Life is 10% of what happens and 90% of how you react to it. Take it day by day and conquer each battle one day at a time. In the meantime, smell the sweet roses along the way.

 – Your faith has to be stronger than your fear. Look in the mirror and tell yourself that you are strong and that you are beautiful.

 – Life is really about relationships. The relationships you have with your friends, your family, your work colleagues and yourself. It’s too often that we just get through our days without doing what we really want to do. I encourage you all to write down your dreams, both big and small, and set forth to make them happen.

I’m still terrified that I may not live a long life, but thanks to my support group I’m more determined than ever to live a meaningful, happy life.

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Good news! You can register for the next YSC Online Video Support Group session! There are three different groups to choose from – In Treatment, Metastatic or the 30 and Under group.
Each group will meet two times a month from February – April. You can find out more information and register here.

 

 

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YSC is creating the Next Generation of Young, Educated Breast Cancer Advocates

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This is big news….. YSC has just selected 10 exceptional women who will become the next generation of breast cancer advocates in the United States.

Everyone knows that YSC has been the voice for young women affected by breast cancer since its inception in 1998, but did you know that YSC has also led the way in advocacy for breast cancer in young women?

I believe that the interests of young women need to be represented in the nationwide conversation about breast cancer – at scientific conferences, legislative hearings and on research grants, among others.

I believe that YSC must ‘have a seat at the table’ in every breast cancer conversation in order to ensure that the unique voice of young women is being heard.

I also believe that YSC has the sole responsibility to create this next generation of advocates. No one else can do this…. It has to be us.

I am proud to announce that YSC has created a NEW exclusive program called
‘RISE’ – Respected Influencers through Science and Education. This program is for volunteer advocates that YSC will train in all aspects of breast cancer, including science, research, advocacy and policy…. so they can sit at those ‘tables’ and ensure the voice of young women is always being heard.

Each RISE advocate selected for the program will serve a three-year commitment. Every year, a new class of 10 new participants will be selected to participate in the program. YSC plans to graduate 40 leaders at the end of six years, resulting in a new generation of educated, smart, young women to join the scientific conversations that are happening between researches, doctors and the government.

Once trained, the RISE advocates will be qualified to speak knowledgeably and credibly on behalf of YSC and other young survivors. This is vitally important, because breast cancer in young women is not simply a disease diagnosed at a young age; it has biological characteristics and treatment concerns that differ from diagnosis in post-menopausal women.

Please join me in welcoming the very first YSC RISE class of 10 advocates!!!

RISE Advocates 1

RISE Advocates 2

RISE Advocates 3

 

 

 

Read their bios and learn more about the Rise program.

 

 

 

 

 

YSC is an organization that changes the lives of young women diagnosed with breast cancer across the United States every day. And this is just another example of our leadership, dedication and commitment to young women who have been affected by this disease. #feelingproud

Did you know these facts about YSC and its history with advocacy?

 – YSC held its first Medical Research Symposium in 2001 and initiated research on breast cancer in young women through partnerships soon after.

 – In 2002, a Wall Street Journal article credited YSC as a major catalyst for changing the landscape of breast cancer research.

 – YSC has published numerous position papers on controversial topics, including the recent ACS Screening Guideline Updates.

 – After an exhaustive 18-month collaboration with advocates, leading researchers and clinicians, YSC released its “Research Agenda” in May 2014, listing the top research priorities. The agenda includes research priorities in the areas of metastasis, treatment, pregnancy and fertility, quality of life and survivorship, and risk factors. View the executive summary and recommended priorities at youngsurvival.org/research-agenda.

 

 

 

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Ready for a Moonshot to End Cancer

Vice President Joe Biden and Dr. Jill Biden do a photo line at a Breast Cancer Awareness month reception, in the library at the Naval Observatory Residence, in Washington, D.C., October 24, 2012. (Official White House Photo by David Lienemann)

YSC CEO Jennifer Merschdorf and former YSC President of the Board Lisa Frank with Vice President Joe Biden and Dr. Jill Biden at their home in 2012.

It is not every day that the President of the United States says he wants to end cancer once and for all.

And it is certainly not every day that the President talks about ending cancer at a State of the Union address.

But it actually happened this week, and the President clearly appointed the right man, Vice President Joe Biden.

I loved what Judy Salerno, CEO of Komen stated about this news in the Huffington Post: “President Obama’s announcement of a cancer “Moonshot” – with Vice President Joe Biden at the controls – is sending positive shock-waves through the cancer community today. It is the right initiative, at the right time, with the right leader – and a test of our collective will to confront a disease that affects every American, directly or indirectly, over the course of our lifetimes.”

She is totally right. It is the right time and he is the right leader.

However as a member of the National Breast Cancer Coalition (NBCC), I feel it is important to remind us that NBCC has been calling for this bold action for some time now with its 2020Deadline campaign. Maybe now with this united national movement under Biden’s leadership it will actually happen!

OK – so what the heck is all this moonshot talk about anyway? According to Biden’s blog – this is what it actually means:

 – The Federal government will do everything it possibly can — through funding, targeted incentives, and increased private-sector coordination — to support research and enable progress.

 – We’ll encourage leading cancer centers to reach unprecedented levels of cooperation, so we can learn more about this terrible disease and how to stop it in its tracks.

 – Data and technology innovators can play a role in revolutionizing how medical and research data is shared and used to reach new breakthroughs.

 – We will help the oncology community improve communication with doctors across the United States and around the world, so the same care provided to patients at the world’s best cancer centers is available to everyone who needs it.

 – And we will ensure that the patient community is heard — so patients and their families are treated as partners in care, with access to their own data and the opportunity to contribute to research.

Giant #hellacool high five to Biden from me. Especially the part about the voices of the patient community being heard…. Yes!

While most of the cancer community is celebrating the commitment from the government, there are a few concerned voices out there. Take the article published by Time Magazine Why Curing Cancer Is Not a ‘Moonshot’ – where they state: “There is nothing wrong with calling for a national commitment to do something that’s very hard and, often, very expensive ….. Obama—and Nixon before him—deserve credit for throwing down that challenge flag against cancer. But this moon is actually many moons. Expecting a single, final victory will only make us fail to notice the smaller, more incremental ones when they come.”

While people debate if curing cancer is possible or not, YSC will continue to focus on supporting the one quarter million young women in the United States who were diagnosed before their 41st birthday – that is our job.

However, between you and me, there is nothing that would make me happier than for YSC to go out of business because there was no more cancer.

So Vice President Biden, YSC commends, applauds and fully supports you and your work…. and God Speed.

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TAKE ACTION!

Vice President Biden has asked to hear from those impacted by cancer. We encourage you to share your stories with him and include this paragraph at the beginning:

Young women can and do get breast cancer. This year, nearly 13,000 women will be diagnosed with breast cancer before their 41st birthday. And more than 1,000 women under age 40 will die from breast cancer. These women leave behind young children, family and friends to face life without them. I volunteer for Young Survival Coalition (YSC), which is dedicated to supporting and advocating for young women affected by breast cancer. I have had to say goodbye to too many friends. It is time to find a way to prevent cancer from developing and prevent it from spreading in those who have already been diagnosed.

 

 

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Mountains, Trees and Little Green Peas

Here is some great advice on starting the new year right- thanks to Dacia Breeden, RD who is a featured speaker at YSC’s upcoming Regional Symposium in Jackson, MS. Join us in Jackson on January 23 for her awesome session on nutrition after a breast cancer diagnosis, an interactive cooking demo and a day filled with education and connection! Register today.

When I was a kid, one of the most common vegetables my mom cooked was green peas. I was NOT a fan. I would sometimes move all my little green peas around, trying to hide them under my mashed potatoes, hoping my mom would believe I ate them or at least some of them, so I could have my chocolate chip cookies for dessert. Of course, she would discover my little green pea tricks and then encourage me by saying, “just taste and see…you never know, you might actually like them!”

Sometimes, I still feel like that little kid, preferring my chocolate chip cookies to my green peas. I always remember something my mom did, though, which has helped me to choose the healthy foods first. See, as a young child, I loved drawing; especially landscapes with mountains and trees and a pretty sunset. One night during supper, when I was trying to rearrange my green peas again, Mom looked at me with a smile and told me something I’ll never forget. “Those are not really green peas,” she whispered. “They’re actually little green trees that would love to sit on the peak of your mountain of mashed potatoes. And look here! We can add a little sunset!” she smiled with her arm reached over, as she dropped a dollop of butter onto those tall fluffy mountains. And so it was accomplished…the moment I began to love those little green peas. In fact, I no longer wanted to eat my potatoes without my little green trees! She had used my love of art to help me see food in a different light, like a canvas, if you will.

Little Green Trees

My little green trees on my mountain.

A change in perspective, a change in the way I saw my food is what I experienced that day so long ago. I think that is what often times is required of us when we are trying to make a change, any change; but especially, when it comes to the food choices we make. We just need a reminder of what food was really designed to be. See, most of the time, we are making food choices solely based on our taste preferences, but when faced with a health crisis we must shift our perspective to a different facet of food, the beautiful healing power that it can provide to our bodies.

So I end with one question for you to ask yourself before taking that next bite, “Is this food giving to or taking away from my fight with cancer?” I would dare to say we’d all take a second helping of those little green trees. Wouldn’t you?

Just taste and see! Here are 5 cancer fighting foods to try for the New Year.

Blueberries: Add to smoothies, oatmeal, yogurt, muffins or pancakes.

– Broccoli Sprouts: Add to sandwiches, salads, or soups.

– Mushrooms: Add to salads, scrambled eggs, stews, or stir-fries.

– Pomegranates: Add as a garnish for salads.  Add the juice to smoothies or iced tea.

– Walnuts: Toss them into a salad. Add to your favorite baking recipe.

For more healthy cooking ideas, visit CookForYourLife.org.

 

 

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YSC Board of Directors Welcomes 2 New Members in 2016!

I am pleased to announce that as of January 1, 2016, YSC has two new exceptional Board Members: Pablo Colon and Shauna Martin.

These incredible individuals come to the YSC Board of Directors with their own stories about breast cancer, and both are committed to helping YSC reach our growth goals in the coming years.

I would like to introduce you to both of them:


Pablo Colon
Pablo Colon:
Pablo is strongly connected to the YSC family in two ways. First, he was actively involved in the online YSC community boards while his then girlfriend (now wife) Erin went through her breast cancer diagnosis in 2009. Pablo invested his time and boundless energy in the YSC community boards to help gain as much knowledge as he possibly could to support Erin through her journey.

As Erin healed, Pablo began looking for a way to give back to YSC, and he discovered the YSC Tour de Pink (TdP). Pablo has become a leader of the TdP community as captain of the powerhouse team “I ride 4 her.” His incredible team raised over $100K in 2015 alone! Read more about Pablo from his guest blog last year.

Pablo’s commitment to helping others extends beyond YSC to the community in general.  He is a board member of United Way of Coastal Fairfield County and the Bridgeport YMCA. In his role as EVP & COO of Radio Cumbre Broadcasting, a family-owned Spanish radio station, he uses the station’s outreach to the Hispanic population to bring news and resources to their listeners.

Pablo and Erin live in East Norwalk, Conn., with their beautiful three-year-old daughter, Dalia.

I am thrilled to have a co-survivor joining the Board of Directors as we continue building our co-survivor support programs.

Shauna Martin

Shauna Martin:
In 2005, Shauna was diagnosed with breast cancer. With a young family to care for, she turned to daily green juicing to recover from the trauma of multiple surgeries and the toxic effects of chemotherapy. After discovering its life-restoring power, she made it her mission to get a green juice into the hands of as many other people as possible, so they can thrive as she has.

Founding Drink Daily Greens LLC in 2012, Shauna now works to accomplish this mission through crafting delicious new recipes and selling her Daily Greens in retail outlets nationwide.

Shauna has served on the Board of the Breast Cancer Resource Centers of Texas for the past nine years. She is also a founding member of the Pink Ribbon Cowgirls, a social network of young breast cancer survivors, and she is a frequent speaker and chair of the organization’s breast cancer fundraising awards.

Shauna’s story has appeared nationally on MSNBC News Nation with Tameron Hall, Fox News, Fox Small Business Center and CNBC. She has also appeared in numerous national publications, including Huffington Post Business, Family Circle, InStyle, Glamour, Self, Shape, Redbook and Cooking Light.

Along with her sister (also a young breast cancer survivor), Shauna attended the early YSC C4YW conferences and has found tremendous support at the events during the years. Today, Shauna lives in Austin, Texas, with her husband Kirk and their 11-year-old son, Cooper.

Having Shauna join the YSC Board of Directors is a game changer for us. I know her business success, dedication and impressive vision will help young women with breast cancer everywhere.

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Serving as a board member for a non-profit is one of the most challenging and rewarding volunteer experiences a person can have. Both of these amazing people have demonstrated extreme commitment to young women diagnosed with breast cancer and I know are going to be #YSCAwesome!

To see a list of the entire YSC Board of Directors, click here.

 

 

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Celebrating My Miracles

My sister Tracy and I out in NYC in 2008. This was the best night ever!!!

When I was 20 years old, my sister Tracy was diagnosed with breast cancer at age 32. Before that day, I thought only older women got breast cancer. It was incomprehensible to me that my vibrant sister, mom to a one-year-old son, could have it. Our family rallied around Tracy, as did her Young Survival Coalition (YSC) sisters. Ten months after she completed her treatments, we received the devastating news that Tracy’s cancer had come back – and she had stage 4 metastatic breast cancer.

Eight years after my sister’s diagnosis, my two other sisters and I decided to undergo genetic testing to see if we were at high risk for developing breast cancer. Thankfully, my sisters were not, but I found out that I was BRCA1 positive. I had an 87% chance of developing breast cancer in my lifetime!

I had to make some tough choices but because of my connection to YSC, I knew that I had options and that I had someplace to turn for information, guidance, hope and friendship. A few months later, I decided to have a prophylactic bilateral mastectomy with reconstruction. While undergoing tests and preparing for my surgery, I learned the shocking news that not only was I BRCA1 positive, but I already had breast cancer!

Though I had already decided to have the mastectomy, I hadn’t planned on undergoing chemotherapy or having treatments that could impact my fertility. Meanwhile, Tracy’s condition was worsening. Our families – biological and YSC – were by my side in New York as I recovered from surgery and, at the same time, by Tracy’s bedside in New Jersey before she passed away at age 41.

The morning of Tracy’s wake, I was scheduled to have my eggs harvested, a fertility option introduced to me by YSC. I knew Tracy would want me to do whatever I could to preserve my chances of having a baby, so I kept my appointment. That morning, I had seven eggs retrieved. That afternoon, I delivered Tracy’s eulogy. It was one of the hardest days of my life, but I channeled strength from her.

The road back from the death of my sister and my diagnosis and treatment has not been easy.  During treatment, my boyfriend found it difficult to cope with my illness and we realized we had vastly different life goals, so our relationship ended and I found myself struggling to stay positive.

Then I was reminded that I had promised a date to the younger brother of a close friend. He had reached out to offer support during my cancer diagnosis, and I was surprised to learn from his mother and sister that he had a crush on me. I was hesitant to go on a date with Kevin, as I was 30 and he was 23. He was just starting his career and life and I was dealing with the loss of my sister, a breakup and CANCER! I weighed 95 pounds, had no hair and my skin was a lovely shade of yellow. What could he possibly see in me and why would he want to get involved with me and all my baggage?

We went to dinner and he wouldn’t stop staring at me. I had chemo the day before, so I was wondering if I was looking extra frail or if my wig was crooked. When I asked, he said, “You’re beautiful! I can’t believe you’re actually here with me!” I decided to lay it all on the line by telling him I wanted marriage, a family and a possible career change, and if he wasn’t ready for these types of things, then we should enjoy the rest of the night and continue our friendship.

Two years later, as I crossed the finish line of my second YSC Tour de Pink, Kevin was waiting for me on bended knee with a beautiful ring, a question and the promise of forever. We were married on June 24, 2012 on a beautiful summer day. EVERYTHING about that day was perfect. We came into our marriage with our eyes wide open and absolutely in love with one another.

Soon after, we tried to start a family, knowing it was going to be hard for us. A year later, we went to my fertility doctor. Another six months of hormone treatments ended in the loss of a fertilized egg, so Kevin and I decided we would use the eggs I had frozen five years earlier.

As I was preparing my body for the egg implantation, I laid in the procedure room with the nurse who originally helped retrieve my eggs. She said “Jamie, I’m so happy I can be here with you today. I know your sister is here with us and we’re all praying for you.”

Out of the seven eggs frozen, only two survived thawing and we were encouraged to use both for the best bet of at least one healthy pregnancy. After two long weeks, Kevin and I headed for a blood test to determine if I was pregnant. A voicemail from the doctor’s office was waiting when we got home. “Congratulations Jamie, you’re pregnant and your HCG hormone level is really high. It’s a healthy pregnancy!” A few weeks later, during an ultrasound, we saw the soft flickers of two hearts beating. I was truly pregnant with two miracles.

We were so happy to learn we were having two little girls, but I also remember lying in bed one night and crying. I was worried that I may have passed along my BRCA gene mutation. Kevin hugged me tight and reminded me that things would be different with our girls. We’re educated about the gene and what it means. Also, medical advances are happening daily. When the time comes, they’ll know all of their options and Kevin and I will be there with them every step of the way.

I continued to ride my bike through the pregnancy, even riding in the 2014 Tour de Pink while seven months pregnant. But a month later, I was placed on bed rest. On November 5, Teresa (Tess) Pleva Nickerson and Graceanne (Gracie) Pleva Nickerson entered the world. Both girls were 4 pounds 11 ounces and 17.5 inches long. Our miracles were finally here and we started our lives as a family of four.

Jaime and Family

When I was first diagnosed with cancer, I was uncertain about my future. To be here, seven years after my diagnosis, cancer free, married and mama to two of the most amazing beings is all of my dreams come true.

image004Last month, we celebrated our daughters’ first birthday. The joy of each milestone is indescribable, and it reminds me every day about all that YSC did for me.

I chose to give back after my experience and support other young women as an YSC SurvivorLink volunteer and State Leader. I also help by raising vital funds to ensure that YSC will be here for the 11,000 young women who will be diagnosed with breast cancer each year. I signed up for my first Tour de Pink in 2010 and I have ridden every year since. It has been an incredible journey. I am excited to participate in YSC’s new South ride in Florida this year!

This ride started as a way to take power back from cancer, but it has turned into so much more. I’m now part of the most amazing, supportive and loving family – the TDP family. I started as a solo rider and now am part of Team Pleva. To date, we have raised more than $100,000 for the organization that was there for my sister, my family and me during the most difficult time of our lives – YSC.

If you are a young woman who has been diagnosed with breast cancer, you can read other stories and share your story. Connect with other survivors and learn about all of the incredible resources available from YSC. If you would like to make an impact, learn about how you can get involved or support YSC with a tax-deductible donation.

 

 

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Top Tips for Holiday Self-Care

Holiday Self CareThis time of year is different from no other except that, perhaps, the expectations are higher. We are all busy beings, and maybe this year, even for just an afternoon, we can choose to actually focus on the human being part of ourselves rather than the human doing.

For cancer survivors and their co-survivors alike, taking steps to treat oneself with generous gentleness is of paramount importance while taking peaceful steps between the wrapping paper and the stuffing.

 

CancerCare offers wisdom which arguably is worthy advice for us all. The “cliff notes” version includes: create new traditions which honor the energy you have, take advantage of online holiday shopping, spend time with those by whom you feel loved and supported and make plans ahead.

I would add that it is certainly fine (and encouraged) to say no. Energy levels and, particularly during this season of celebration and cheer, emotional levels can and will change. If you need permission, here it is: it’s okay to change your mind. It’s okay to do things differently. It’s okay to ask for help. It’s okay to do both of these things spontaneously and at the last minute. Others may not like these changes and that’s okay.

Dana-Farber Cancer Institute aligns with CancerCare’s tips and adds the following:

 –  Pay attention to how you feel. While you might be surrounded with holiday music (which stores have been playing since late-October), you may feel reflective and introspective.

 –  Don’t pressure yourself to put on a happy face and beat to the drum of others. That can be exhausting and anxiety-producing.

 –  Pay attention to what your body communicates.  If you decide to go to a holiday drop-in and feel good at 10 a.m. but your energy tanks at 2 p.m., it’s okay to choose not to go. You are more important than the party, even if it’s hosted by your very best friend.

 –  Keep things simple. If you are someone who normally bakes for the neighbors and the mail carrier, maybe this year you can ask your friends to bake for you. They can deliver those delicious treats on your behalf. This turns out to be a “two-fer.” Friends who ask “what can I do” are taken seriously and given a job, and you see an important tradition honored. Meanwhile, you’re not exhausting your precious energy.

 –  “Me” time may be even more important at this time of year. Even if it’s for 30 minutes, honor taking those moments to restore and rest.

 

Whether or not you’ve tapped into YSC’s resources, now is a wonderful time to lean in to them.

SurivorLink

YSC’s SurvivorLink Peer Mentoring Program.

 –  Want to talk with someone 1:1? Try SurvivorLink.

 –  Want to meet in-person with other young survivors? See if there is a F2F group near you.

 –  Prefer to chat online? Our Community Boards are a few key strokes away or connect through our Online Video Support Groups from the comfort of your home.

I know that we have all heard some version of these suggestions in one form or another over time. I warmly encourage you to test out a few of them and see what happens. I don’t think you’ll be disappointed, and, who knows, you might just give yourself a gift!

More resources for coping with cancer during the holidays:

 –  Cancer Support Community

 –  American Cancer Society

 

 

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Join me in Jackson, Mississippi for the YSC Symposium!

Jami Watson Quote

I am super excited for the YSC Symposium to come to my home state of Mississippi in January 2016!! This will be the first event of its kind in the area and it’s much needed, offering educational support to so many young women that can use it in this region.

As a two-time breast cancer survivor, I can NOT wait to connect with other young women like me. Originally diagnosed at age 33, during both of my journeys through breast cancer, I had many women reach out to me, but no one that was near my age. This event will bring many young women throughout the south together for some education, fellowship and FUN!

There are so many interesting sessions to attend including discussions on career and workplace rights, embracing relationships and intimacy, easy ways to eat healthy, and finding financial and insurance resources. I’m most looking forward to the nutrition and wellness sessions. I’m really interested in learning new tips to help improve myself, both physically and emotionally. With so many great sessions, I wish I could attend them all!

Jami Watson

Jami Watson and her husband

As well as offering topics for us survivors, there are also sessions for our co-survivors. This is anyone that may be helping us with our journey through breast cancer. My husband couldn’t wait to sign up! Co-survivors will have a chance to attend sessions just for them. Our co-survivors need support just as much as we do, considering how much they help us through some difficult times. After all, the experience is hard on them too.

Beyond the sessions, I can’t wait to dance the night away at the evening celebration!

I hope to see you January 23, 2016 in Jackson!

To learn more or register, visit symposium.youngsurvival.org.

 

 

 

 

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Updates from the 2015 San Antonio Breast Cancer Symposium

In addition to supporting and educating young women affected by breast cancer, YSC is also focused on being the leading voice for young survivors. One of the ways YSC does that is by working with the research community. Two years ago, YSC created a Research Think Tank that brought together advocates, researchers and physicians to identify the most pressing research questions, which must be answered to improve the quality and length of life for the young women we serve. The work of the Research Think Tank resulted in the creation of a Research Agenda that focused on six topic areas:  Metastasis; Treatment; Pregnancy and Fertility; Quality of Life and Survivorship and Risk Factors. You can read the full details in our Research Agenda.

SABCS LogoAs part of our focus on improving the lives of young survivors, YSC attends and presents at national conferences like the San Antonio Breast Cancer Symposium (SABCS), the premiere forum for the presentation of the latest breast cancer research news. As YSC’s Senior Program Manager for Research and Advocacy, I will be attending this year, along with RISE Legacy advocate Tracy Leduc. We will be posting videos to our YouTube channel from SABCS with news and information pertinent to young women with breast cancer.

Curious as to what was shared from the 2014 SABCS? View video updates from the 2014 SABCS here.

Interested in helping to move research on breast cancer in young women forward?

ResearchAgenda-2014_FINAL-cover image– Read YSC’s Research Agenda and publication on breast cancer in young women. Share it with your doctors and any researchers you know.

– Participate in clinical trials. It is one of the most meaningful actions we, as members of this community of young women diagnosed with breast cancer, can take to help each other. We need data to better understand breast cancer, and how to treat it, in young women.

– Review YSC’s position papers on controversial topics. As new research and guidelines are published, YSC carefully reviews the scientific data and develops a position or response to the findings. In October, the American Cancer Society published new screening guidelines, and YSC responded.

– Living with Metastatic Disease? You should check out the Metastatic Breast Cancer Project which connects metastatic breast cancer patients (and their tumor samples and medical records) directly to researchers to speed new discoveries. YSC is an advocacy partner on this project.

– Do you have a family history of breast cancer? If so, join the ABOUT network, a patient-powered research registry that focuses on hereditary breast and ovarian cancer. YSC is also a partner on this project.

– Diagnosed while pregnant or have a child after breast cancer? You can participate in a confidential registry that tracks outcomes to determine safety.

Check our YouTube channel every day this week for updates and news from SABCS.

 

 

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Getting the Most Out of the YSC Summit

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Lynnette and John

In April 2014, Lynette was diagnosed with metastatic breast cancer. When YSC invited survivors and co-survivors to the 2015 Summit 11 months later, she and her husband John were eager to attend and ready to learn as much as they could. They took advantage of the workshop tracts for co-survivors and women living with metastatic breast cancer. Afterward, they took their new knowledge back to California and Lynette signed up to be a State Leader.

YSC interviewed Lynette and John about their experiences at the 2015 Summit, and the advice they might give to first-time attendees.

 

What was your favorite part of the Summit?

Lynnette – I live in a small town, so just being around other young cancer survivors/fighters was great. But being with other metastatic fighters was amazing!  I was just about a year out from diagnosis and had yet to talk to anyone in my situation. Being able to connect with the other ladies changed my life!

John – My favorite part of the Summit was when the metastatic group of women decided to sit together as a group at the general group sessions attended by everyone. I thought it demonstrated unity.

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Young women facing metastatic breast cancer together.

What were your favorite sessions?

Lynette – I could listen to Dr. Susan Love and Dr. Don Dizon all day!  The “Young & Living with Metastatic Breast Cancer” session was my favorite. It was like a 90-minute therapy session. I knew sitting in that session I needed this more than I thought I did. That night I told my husband we had to bring YSC to our town! I knew I couldn’t be the only young adult with breast cancer…other people need this amazing support, too!

John – My favorite sessions were the co-survivor sessions and the two sessions headed by Dr. Susan Love and Dr. Don Dizon, who were informative, honest and inspiring.

Do you have any “must-do” recommendations for people going for the first time this year?

Lynette – Don’t miss the General Sessions. A must for me was the Metastatic session and the Advocacy session.

John – As a must-do, I would highly recommend all of the co-survivor sessions, as well as any Advocacy session. The Advocacy session is important to learn how to take the first steps as a metastatic or breast cancer advocate for YSC. The lessons learned in this session can be applied immediately when returning home to bring some much-needed information/awareness about the goal of finding a cure.

What was it like to attend as a co-survivor and meet other co-survivors?

John – As a co-survivor, I wasn’t sure I would have a real place at the Summit, but I was hoping to learn some new information on treatment methods I may not know about.

As a male who generally does not seek open communication with strangers, I found the co-survivor sessions were invaluable because I was able to meet others like me. Meeting them face-to-face is totally different from “meeting” through the internet, and the shared stories and lessons learned made a more meaningful impression on me.

What was it like to attend as a young woman living with metastatic breast cancer and meet other women like you?

Lynette – I was the only young adult to be diagnosed with mets in my town, and there was very little support for me. YSC was the first place I found that spoke about metastatic breast cancer in young adults. The support alone was just what I needed. But the icing on the cake was the “me, too!” and ”I’m not crazy.” I found where I belonged. I found a place where I was no longer alone.

Any other helpful hints?

Lynnette – You won’t have time to attend all of the amazing sessions during the Summit, so make sure you read what the sessions are all about ahead of time and decide which ones are most important to you. Enjoy meeting the amazing people you’ll soon call your friends!

 

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