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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An Open Letter To Woman Newly Diagnosed With Breast Cancer

I’m so sorry. I’m so, so sorry. Everyone around you is in shock … YOU are in shock. You’ve just heard those fateful words, “It is cancer.” There’s a part of you that wants to hide under the covers, only coming out when it’s proven that this is all just a horrific nightmare. There’s another part of you that wants to “get it over with” – whatever that means. And there’s a part of you that knows you need to do something … but you have no idea what.

I understand. I hear you. I’m with you. I remember. Take a deep breath. Because there is help out here for you. You are not alone.

Jenn with her husband, Craig.

Jenn with her husband, Craig in 2013

Nothing could have prepared me for that dreaded phone call in 2013 when at age 38 my doctor told me, “I’m sorry, but it is cancer.” Thinking back, the fear and surprise were palpable. I remember strange things about that moment: the pressure of my husband’s hands on my shoulders, the feel of the cold kitchen table under my arms, the heft of the pen in my hand. The most tangible memory, though, is the feeling of being overwhelmed. There was so much I didn’t know. Where should I start? Who should I call? What should I do?

I was lucky – one of my friends is a State Leader for YSC – so I had immediate guidance through that terrifying time. But even with the assistance of my breast cancer sisters, I felt lost. I couldn’t retain all of the information, and I didn’t want to call my friends every hour with new questions.

NDN_2014_cover for YSC website

YSC’s Newly Diagnosed Navigator is a free resource.

Then, I remembered that someone had given me a book to share with breast cancer survivors long before I became one myself. I rifled through my closet until I came across it. Emblazoned across the top were the words “Newly Diagnosed Navigator.

This book became a lifeline. The Navigator divided the topics into easily processed bits and provided me with plenty of room to add my own thoughts and questions. There’s even a whole section where you can store all of that medical information the doctors’ staff asks you at every appointment.

Don’t get me wrong: this book wasn’t a magical unicorn that rid me of my fear of cancer. But it did rid me of the fear of forgetfulness. It enabled me to feel organized in the face of chaos. It acted as a crutch to my failing memory. The Navigator covered all the topics I was nervous about and all of the topics I didn’t even know I should be thinking about; from a list of questions for my doctors to the truth about fertility and even advice on how to talk to my kids.

If you’re a young woman under the age of 40 who is facing down a breast cancer diagnosis, reach out to the YSC community.  get your Newly Diagnosed Navigator. It won’t solve all your problems, but it will help you overcome them one day at a time. Remember, you are not alone.

With love,
Jenn

jenn mcrobbie with family

Jenn and her family today

Jenn McRobbie is a breast cancer survivor, life coach and author. She published her first book in March 2015: Why is She Acting So Weird? A Guide to Cultivating Closeness When a Friend is in Crisis. The book reflects her experiences interacting with friends after diagnosis and during treatment. Jenn believes that friends are crucial to successfully navigating a crisis, so she developed the guide she wished had existed when she was diagnosed. It is her treatise on empowering friends to rise and lift each other during a crisis. Learn more about Jenn.

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Finding a Sisterhood at the YSC Summit

Early this year, my life literally changed. I know its cliché, but it’s true. I attended the YSC Summit in Houston, Texas, for three mind-blowing days. I was three years out from my breast cancer diagnosis and really had no connections with other young survivors. That is a very lonely feeling. I knew for me to really connect, I needed to commit to going to the YSC Summit, so I signed up.

I contemplated taking someone along with me, but I knew deep down I wouldn’t force myself to meet other women unless I went alone. I arrived on the first day feeling overwhelmed and anxious about being in a room filled with people I didn’t know. The opening ceremonies definitely put me at ease and I loved how everyone was so upbeat and friendly!

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Leisha and her new sisters at the YSC Summit.

The best thing I did was join in on the BBQ dinner the first evening, and I just happened to find myself at a table with five amazing women. This experience altered the rest of my weekend. Being able to share my story and hear so many other candid women share theirs was humbling. I will forever be grateful to those women (you know who you are) who, with friendly smiles, started a conversation with me.

It’s not all fellowship. There are really smart people at the Summit to inform you, answer your questions and just get you thinking. The sessions were amazing. My absolute favorite was about dating, relationships and sex. Sometimes you need to be reminded that it’s OK. These issues around dating are normal and I think this was a big relief for me. I also enjoyed hearing about other forms of treatment for ER+ breast cancer. It reassured me that I was doing the right things for my diagnosis, and it reminded me to always be my own advocate.

Attending the YSC Summit post treatment was THE best thing I have ever done for myself. I feel like because I was done with treatment when I attended, I had a clear sense of where I was in my journey and that helped me take from the breakout sessions the information that was pertinent to my personal diagnosis and situation.

Another thing that I totally appreciated about YSC is they offered discounts and help to get to the conference. I signed up to do fundraising to attend and did much better than I thought I would. It just takes asking. With the fundraising, I received reimbursement toward travel expenses and I also took advantage of the airline discount codes. Don’t be afraid to fundraise; you could surprise yourself!

My advice to first timers is join in on the fun. Strike up conversation with others around you. They may turn into lifelong friends. Jump in on the icebreakers (as awkward as it may feel at first), go to the group dinners, participate in the group exercise classes and definitely don’t miss out on the last night’s celebration!  Let this be three days when you don’t worry about being judged. This is a time to just be yourself.

My life changed at the Summit. I made the connections that I was missing for three years and it was great to feel  “normal” for a few days. When you are in a room full of women, men, professionals and co-survivors who have lived through and experienced some of the same things and thoughts, it’s honestly a relief! I made some lifelong friends, these women inspired me to ride in YSC Tour de Pink West Coast last month and to start a Face 2 Face network in my area. That’s a life changed for the better!

leisha at TdP

Leisha at the 2015 YSC Tour de Pink West Coast

 

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The YSC Summit Changed My Life

I was diagnosed in February 2014 with HER2+ breast cancer at the age of 35. After chemo, a mastectomy and radiation therapy, I’m cancer-free! I’m also actively involved in YSC, and it all started when I attended the Summit.

YSC-Summit-LogoThe 2015 YSC Summit changed my life! I first connected with YSC online at the recommendation of a friend. The Newly Diagnosed Navigator I received from YSC was a comforting and useful tool during treatment, so I thought I’d see what the Summit was all about. I attended on a travel grant (I wouldn’t have been able to go otherwise) and I’m so glad I went! I met many sweet new friends who had hope, faith and encouragement to share.

I was so excited to meet Hollye Jacobs!

I was so excited to meet Hollye Jacobs!

The atmosphere was light, open and welcoming throughout the conference. I met Hollye Jacobs, author of The Silver Lining:  A Supportive and Insightful Guide to Breast Cancer. She was the keynote speaker for the closing session of the conference, and it was a privilege to be in her presence and hear about how hope and a positive attitude can make such a difference for survivors.

The other sessions were so informative, and I was impressed with the variety of workshop topics. I particularly enjoyed one session where a doctor spoke openly and answered questions about sex during and after treatment. He made it comfortable to talk about topics about which I would never have asked my own oncologist. I came away from that session empowered with life-changing information that has since helped put my own sex life back on track.

I threw caution to the wind and decided to try belly dancing one evening of the Summit. What a joy it was to try something new in a safe environment of women just like me! The instructor made it so easy, and she opened my mind to a new type of exercise that I never thought I could do.

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Posing for a group photo with new friends.

The food at the Summit was fabulous, and they did a great job of catering to my vegan lifestyle. The meals were beautiful and the themes were fun, including line dancing after a Tex-Mex dinner one night.

I didn’t expect to come away from the Summit changed, but I found that YSC’s heartbeat struck a chord with me, and I wanted to get involved. I became a YSC State Leader for South Texas and now I lead a Face 2 Face Support Network in my community. It’s the only breast cancer support group in my town. I’m working with our local hospitals, oncologists and women’s health centers to connect the medical community with YSC’s services. It fills me with pride and joy to help other women facing breast cancer find help and support through YSC. I am so glad I showed up for the YSC Summit 2015. Thanks, YSC!

Ready to find out how attending the YSC Summit might change your life? Register soon, especially if you want to apply for a travel grant!

 

 

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YSC’s Tribute to Cynthia Rubin (1962-2015)

Photo courtesy of Barton, LLP

Cynthia Rubin (1962-2015)

Kind. Fierce. Generous. Funny. Brilliant.

Cynthia (Cindy) Rubin, the second Board President of Young Survival Coalition (YSC) and founding member, passed away on Tuesday, October 20th, leaving her indelible mark on the breast cancer community and all young women affected by breast cancer. Her rich legacy, kind heart, generous spirit, memorable laugh, fierce honesty and endless energy touched too many lives to mention. She was initially diagnosed with breast cancer at age 36 in 1998.

Her brilliant pioneering efforts brought YSC into the forefront of those committed to improving the quantity and quality of life for young survivors, friends and their families. Cindy led with a fierce determination to change as many lives as possible while still caring about the individual members of our community. She brought YSC’s bold mission to the media, the NBA and even the White House. Cindy was the visionary behind YSC’s collaboration with author and filmmaker Beth Murphy. The partnership between YSC and the filmmaker created the Lifetime® documentary; Fighting For Our Future: How Young Women Find Strength, Hope and Courage While Taking Control of Breast Cancer and a book of the same title. Cindy put YSC on the map! And when we were young and struggling, she constantly pulled us up financially and spiritually.

2000 First volunteer leader retreat in NY, NY (cropped)

Volunteers at the 2000 volunteer retreat. Cynthia is standing in the front row, third from the right.

She and her husband, Peter, gave selflessly in so many ways. Cindy launched the effort behind In Living Pink, YSC’s annual fundraiser. Peter often brought the backdrops and worked to set the mood so that Cindy and the committee could host those first fundraisers with incredible personal outreach to everyone in the room. She gave to the YSC no less than she asked others to give.

Peter participated in many Tour de Pink fundraising rides. YSC could count on the couple for donated office and home space for YSC events. Both were beyond generous because they knew how important it was that no young woman felt alone in her fight with breast cancer.

Cindy served on YSC’s Board of Directors from 1998-2008. In addition, she served on the Board of Directors of Judges and Lawyers Breast Cancer Alert (JALBCA) and Sanctuary for Families. She selflessly contributed to each organization always thinking of others first.

YSC is stronger because of all that Cindy gave to us. She was 53 years young when she died of metastatic breast cancer. She lived her life enthusiastically and traveled the world with a voracious appetite for knowledge, art and food unique to each culture. She had an energy level that required working out every day.

On behalf of YSC’s Board of Directors, CEO and staff, this tribute was written by Melody Morrow, Joy Simha, Roberta Levy-Schwartz, Lori Atkinson and Stacy Lewis.

We encourage you to share your personal thoughts honoring Cindy by leaving a comment below.

 

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American Cancer Society Changes Screening Guidelines: What Does this Mean for Young Women?

Today, the American Cancer Society (ACS) revised its guidelines on screening mammography and clinical breast exams (CBEs) in the Journal of the American Medical Association (JAMA). These new guidelines state that, in women of average breast cancer risk, annual screening mammography should start at age 45 and that CBEs should not be performed by physicians on women of any age. For women ages 40-44, the guidelines state that they should have the “opportunity” to begin annual mammography screening. Prior to this October publication, ACS recommended annual mammograms starting at age 40 and CBEs every three years for women in their 20s and 30s, with annual CBEs to begin at age 40.

As the leading voice for young women affected by breast cancer, Young Survival Coalition (YSC) has released a response on these new guidelines. We carefully reviewed all available research when taking a stance on these issues. We believe that better tools are urgently needed to screen, diagnose, detect and monitor for breast cancer in younger women. You can read our full response here.

Let’s break it down a bit further…

Mammography:

Radiology technician examens mammography test

Radiology technician examines a mammogram.

The mammography screening debate is complicated, and a more thorough discussion of the issues and research can be found in our response.

— Screening mammography is testing performed in a healthy population to examine for presence of disease.

— We have known for some time that screening mammography is not effective in women under age 40 because their dense breasts impede accurate results.[i]

— Screening mammography for women over 40 or 50 years of age does not directly impact the young breast cancer survivors served by YSC.

— We interpret the change in ACS’ guidelines as a public admission that there is also no benefit to screening mammography between the ages of 40-44. Not only is there no benefit, but the risks outweigh the benefits enough for a change in recommendation to be warranted.

— YSC concurs. We are not stating that screening mammography should be completely eliminated. We do believe, however, that women should be counseled about the risks and benefits of screening mammography, in consultation with their doctors, and make an individual decision that is best for them.

The above ACS recommendations address screening mammography only and do not impact the use of diagnostic mammography, a test performed because of a lump or other symptom that may suggest the presence of breast cancer. Diagnostic mammography is a vital tool. Women of any age with signs or symptoms of breast cancer should consult their doctors as soon as possible. In addition, screening mammography only addresses women at average risk of getting breast cancer in the general population. It is not for, and the research quoted does not address, screening in women at higher than average risk of being diagnosed with breast cancer (because of a BRCA 1 or 2 mutation, family history of breast cancer, or prior chest radiation), which includes screening residual breast tissue of breast cancer survivors of any age.

Clinical Breast Exams (CBEs):

4.0.4

Clinical Breast Exam (CBE), photo by the National Cancer Institute.

— The recommendation that a CBE, a physical exam to detect visible and palpable breast cancer by a medical professional, should not be performed was surprising.

— In young women with breast cancer, 80% find the breast abnormality themselves[ii], suggesting that the cancer was palpable.

— YSC has reviewed the data and did not find a strong basis for this recommendation. Therefore, YSC does not support this recommendation. When more clarifying evidence is received, we will review and reconsider the recommendation. We would welcome further explanation from ACS on their decision, as well as elucidation of the harms that could occur from CBEs and would outweigh the possible benefits.

Especially in populations without access to breast cancer screening, or who are too young to receive such screening, we are concerned about the recommendation to eliminate CBEs entirely. 

What now?

— Without other reliable screening options, we believe that CBEs should still be performed.

— We recommend that all women are familiar with their breasts and aware of the signs and symptoms of breast cancer.

— If you notice anything suspicious, you should see your primary care doctor or OB/GYN. It is important that you do not accept “You are too young for breast cancer” as an answer from a healthcare provider.

— If you are a young woman at high risk for breast cancer, you should speak with a doctor about when you should begin breast screenings and which ones are best for you.

Whenever new screening guidelines come out, it can be confusing. Remember that these are guidelines for the general population and not women who are at higher risk. You can educate and empower yourself by reading YSC’s, “Breast Health and You: A Young Woman’s Guide.”

We would love to hear from you. What do you think of these new screening guidelines?

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[i] Checka CM, Chun JE, Schnabel FR, Lee J, Toth H.  The relationship of mammographic density and age: implications for breast cancer screening.  AJR Am J Roentgenol. 2012; 198(3): W292-95. Doi:10.2214/AJR.10.6049.

[ii] Ruddy, K. et al., “Presentation of breast cancer in young women,” Journal of Clinical Oncology 27:15S (2009).

 

 

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