Introducing YSC’s Long-Term Navigator

Once you hit the mark of being cancer free for five or more years, you may feel some sense of relief. But, you may also feel uncertainty or anxiety around your future. Why are those treatment effects still lingering? Will I ever feel the same as I did before breast cancer? And additionally, where do I fit in? We often hear from long-term survivors that they don’t necessarily feel like they have a place in the breast cancer community anymore. They may have aged out of the “young” survivor population, yet don’t identify with friends or family members who may have breast cancer now in their late 40s or 50s.

No one understands this better than long-term survivors. That’s why YSC is excited to launch a brand new resource: Beyond 5 Years: A Navigator for Long-Term Survivors.

Long-Term Navigator

YSC wanted to learn more about what long-term survivorship means for young women. So, we set out to really dive deep into the issues unique to this population and create a guidebook just for you. We started by surveying nearly 500 women who identified as young long-term survivors. With their help, we identified the most pressing topics and questions that were on their minds. Then by conducting small focus groups, we were able to discuss these issues in greater detail with long-term survivors and create a robust set of information to include in the Long-Term Navigator.

What we found is that, though there are similar issues as when a young woman first finishes her treatment, there are more that are unique to long-term survivorship. Many of those topics are explored in depth in the Long-Term Navigator—creating a resource dedicated to your specific questions and concerns:

– Managing long-term care and side effects

– Maintaining overall health and wellness, including diet, exercise and green living

– Cultivating your relationships and communicating with family

– Heredity and educating your children and loved ones about their own family history and risk

– Ongoing financial, legal and career issues and how to tackle those

– Defining what your life means after breast cancer

We hope that this information provides the support that so many long-term survivors say is lacking for their population. Interested in getting a free copy? You can order Beyond 5 Years: A Navigator for Long-Term Survivors or download a copy  .

The Long-Term Navigator complements YSC’s existing Navigator series which is designed to support and educate young women at every phase of their breast cancer experience. The other guidebooks include the Newly Diagnosed Navigator, Post-Treatment Navigator and Metastatic Navigator.

Are you a healthcare provider who treats young women? You may also be interested in  YSC’s Intro Kit—a great way to share all of YSC’s resources with the young survivors you see.




Comment (1)

So your girlfriend’s got cancer?

Breast cancer not only impacts the patient, but also the co-survivors (partners, spouses, siblings, parents and friends). In addition to the 12 profiles of young women affected by breast cancer, we also wanted to share the true impact of breast cancer from a co-survivor’s perspective.

Tell me a little bit about your girlfriend Erin’s diagnosis:

Pablo and Erin Colon. Photo by Jake Orness.

Pablo and Erin Colon. Photo by Jake Orness.

In April 2009, my girlfriend Erin was diagnosed with invasive and In Situ Ductal Carcinoma in her left breast and a benign papilloma in her right breast. She was 32.

Erin lost her mom to breast cancer nine months before she was diagnosed.  Even though there is a strong history of breast cancer in her family (her mom, three aunts and a grandmother), Erin is BRCA negative.  She could have opted for a lumpectomy but given her family history, Erin decided to have a bilateral mastectomy.

Because of the location and size of her tumor, she was a candidate for a nipple sparing mastectomy with immediate reconstruction and tissue expanders. We actually found out about the procedure and the surgeons through the YSC Community Boards.

None of the initial doctors mentioned it until we started asking and they confirmed she was a good candidate.

The surgeons also did a sentinel node biopsy and confirmed that the cancer hadn’t spread to the lymph nodes. The surgery was in June and Erin moved into my house post surgery so I could help with her care. In October, she had a follow-up surgery to replace the tissue expanders.  This was followed by hormone treatment with Tamoxifen that continues to this day.

We were lucky in that while we researched fertility preservation, the nature of Erin’s cancer and her Oncotype DX score were low. Because of the low score, chemotherapy would not provide much benefit, so she opted not to do it. We also didn’t need to do fertility preservation.

What was the hardest thing as a co-survivor?  

The hardest part of being a co-survivor was the feeling of helplessness.  You want to protect your loved ones from everything. I had to come to grips with the fact that I couldn’t protect Erin from cancer, but I could help her with the fight in lots of different ways. I was a shoulder, a sounding board, note taker at appointments, the guy who makes the doctors explain things fully and doesn’t let them just rush out of the room and – above all else – the researcher. I threw myself into research mode. (That’s how we found the YSC website and Community Boards.) I felt that by researching and learning everything I could about her type of cancer and treatment options, I was giving her the tools she needed to fight. And I was fighting it right alongside her. I felt less helpless and more like an active participant.

The thing that’s tough is you kind of stop taking care of yourself.  You find you are trying to be strong for your partner 24/7 but you are a wreck yourself and don’t necessarily realize it.  The emotions would often catch up with me when I was alone.  I’d be driving alone in the car and not realize I was crying.  It was tough for a 6’ 4” rugby player to admit, but I needed help.  I had a great support network of friends and family. I just needed to open up. I wouldn’t have been able to support Erin through her cancer without the help I got from friends and family.

Pablo, Erin and their daughter Dalia.

Pablo, Erin and their daughter Dalia.

What were resources that you used to help support yourself and your wife?
The YSC Community Boards were a huge resource for me. I’m a nerd so my first instinct is to research. We found out about nipple sparing mastectomies and recommendations for surgeons through the YSC. Even though I wasn’t the one with cancer, the women on the site were really welcoming and helped me tremendously.

What resources were missing, that you wish had existed?
There weren’t really other young spouses/partners I could easily find or talk to at the time.  There is a more conscious effort to assist co-survivors now.

What has happened since her initial diagnosis?
Erin and I got married in 2010, about a year after her last surgery. The oncologist wanted Erin on Tamoxifen for two years before we tried to have kids. At two years, Erin stopped Tamoxifen and we waited three months to ensure that it was out of her system. We were really lucky that Erin got pregnant right away. Our daughter Dalia was born three years, eight months and one day after Erin’s diagnosis.

Tell me about Tour de Pink and what drove you to participate?  

“I Ride 4 Her,” has raised more than $90,000 for YSC in the past four years.

“I Ride 4 Her,” has raised more than $90,000 for YSC in the past four years. Photo by Jake Orness.

Erin and I participated in our first Tour de Pink® (TdP) four years ago as a way to give back to the organization that helped us so much. I’ve ridden in her honor every year since.  Our TdP team, “I Ride 4 Her,” has raised more than $90,000 during the past four years. TdP is really a family.  We have this terrible disease in common that’s affected us all, but we’ve all come out on the other side of it stronger and eager to share our experiences with each other. My wife and teammates inspire me every day.  This year, Erin is riding all three days for the first time in celebration of her five-year Cancerversary.

What words of advice do you have for other spouses/co-survivors?
You can’t take care of your partner if you aren’t taking care of yourself; eventually you’ll crack.  Make the time to help yourself. You need your own support network so that you are strong enough to support your partner.



Comments (2)

Win a Trip for 2 to the We Can Survive Concert!

wcs2014r3As a young survivor, you know that Young Survival Coalition (YSC) is here for you from the day of your breast cancer diagnosis through treatment and into survivorship. YSC is also here for you when it’s time to celebrate life!

Do you ever feel the need to just “Shake it Off?” A night to “Break Free?” To feel “Fancy” and be “Happy?” YSC can make it happen for one lucky young survivor and her guest.

Last year, Young Survival Coalition was the beneficiary of the CBS “We Can Survive” concert featuring the amazing Katy Perry and friends. I’m excited that YSC will, once again, be a beneficiary of the second “We Can Survive” concert on Friday, October 24, at the Hollywood Bowl in Los Angeles.

This year’s incredible line-up includes Taylor Swift, Pharrell Williams, Ariana Grande, Iggy Azalea, Paramore and Sia along with a special guest appearance by Gwen Stefani!

I am thrilled that YSC is hosting a sweepstakes to send one survivor and a guest to the concert. The winner will receive two VIP tickets to the concert, round-trip airfare, hotel, and a special Oakley gift basket! Thanks to our friends at Oakley for sponsoring this awesome opportunity.

So, how do you sign up?

It’s easy!

Go to the sweepstakes page to register and see the full sweepstakes rules. Be sure you register by 11:59 p.m. ET October 14! We’ll announce the winner by Thursday, October 16.

Don’t miss out on this first-ever sweepstakes for young women with breast cancer.


Leave a comment

Categories: YSC SYNC - Survivors


PrintRecently, YSC received the exciting news that we have been awarded a $1.75 million grant to be used during the next five years. This generous funding will enhance the support services for young women diagnosed with breast cancer. YSC was one of only seven organizations to receive a grant in a deeply competitive process, and we are honored and thrilled to have the support of the Centers for Disease Control and Prevention’s (CDC) Division of Cancer Prevention and Control (DCPC).

During our first year, we have prioritized our goals as follows:

o    Evaluate and enhance our existing resources to determine how we can make them even more effective and engaging.
o    Build a more robust healthcare provider program to increase their knowledge, understanding and investment in how to communicate with young breast cancer survivors.
o    Increase multimedia educational opportunities through various platforms so that a larger, more national audience can tap into the wealth of invaluable information.
o    Expand the availability of supportive services for young women diagnosed and their co-survivors through increasing the number of YSC F2Fs across the country.

Why are these important?
We strive to stay current with young women affected by breast cancer. Your feedback tells us that our existing resources are impactful; yet we’re always working to improve and re-assess how we can best support young survivors. We rely on your opinion and the input from medical experts to keep us tuned in to the topics and issues that matter most.

Healthcare providers are brilliant and busy individuals. Even with the progress we have made to debunk the myth that women can be “too young” to get breast cancer, we are still working to get that message heard. We want your healthcare providers to know about how breast cancer impacts the whole person, and we want them to have our educational materials on hand especially our Intro Kits at initial diagnosis.

New programs, including our 2015 Summit, will help us deliver information and build community in more innovative ways, and we are excited to share it with you. During the Summit, our general sessions will feature engaging and dynamic speakers who will deliver short, yet powerful, presentations about relevant topics for young survivors. Naturally, not everyone can attend due to scheduling conflicts, being medically unable to travel or lacking the financial resources, even with travel grant assistance. For these women, we are working on creative ways to make this information more immediately available. Use of multimedia platforms will host medical information, coping strategies, meaningful support and guidance offered at the Summit.

This incredible and generous CDC grant will help YSC do what it does best: offer resources, connections and outreach so that young women affected by breast cancer feel supported, empowered and hopeful.

We thank the CDC for supporting our efforts, and we thank all of you for your ongoing feedback and active involvement in YSC.


Leave a comment

The Collateral Damage of Breast Cancer on Young Women

home page banner

If October makes you cringe a bit, you aren’t alone.

For many survivors and co-survivors, October’s breast cancer awareness campaigns are a constant reminder of what you have been through and may still be going through. We call it the “collateral damage” of breast cancer – the sometimes unspeakable side effects of cancer treatments that we accept as the price of survival. Survivors live with the collateral impact of breast cancer every day of the year, not just in October.  But this month, we take extra time to share our stories with hopes of spreading awareness of the true impact of breast cancer and inspiring action.

  • – This year, when you see the pink, remember there are 35 women under age 40 every day who hear the words, “You have breast cancer.”
  • – More than 71 women under age 45 are diagnosed each day.
  • – Survivors face real issues that often last long after the treatments have ended. And we still don’t have a cure for women with metastatic breast cancer.


We need answers.

During October, YSC will share the true stories of young survivors and the impact that breast cancer has on them and their co-survivors. We will share a new survivor’s story every Monday, Wednesday and Friday. Stories about early menopause, diagnosis while breastfeeding, raising young children through treatments, changes in relationships, intimacy issues, body image, financial challenges, career and fertility impacts. This is a sisterhood that no one asks to join, but once you are a member, you know you have sisters for life.

We invite you to read their stories. Share them on social media. If you are a youngsurvivor, we invite you to share your stories of perseverance and messages of hope.

You can also be part of the solution.

Last year, we began a partnership with Dr. Susan Love, a pioneer in breast cancer research, and Susan G. Komen to drive REAL CHANGE as part of the Health of Women (HOW) Study. Young survivors shared the collateral damage of breast cancer and we encouraged survivors and co-survivors to sign up for the HOW study.

The HOW Study is the first international online study for breast cancer. It is being conducted by the Dr. Susan Love Research Foundation (DSLRF) in collaboration with Leslie Bernstein, PhD, of the City of Hope Comprehensive Cancer Center. The groundbreaking study has a goal of tracking 200,000 women over time with the objective of identifying new risk factors and potential causes of breast cancer. It will also examine women and men with breast cancer, including those living with metastatic disease, to identify factors that are linked to long-term survival and the impact of treatments on their lives. Invite your family and friends to be part of the answer to ending this disease and join the HOW Study.

As we all face the pink of October together, know that there is real action underway, and all women (diagnosed with breast cancer or not) can make a difference with the HOW Study.


Comment (1)
Categories: YSC SYNC - Survivors

On the Court with MetStar Amanda: Young Women Living with Advanced Breast Cancer

Amanda is an 8-year cancer thriver from Pennsylvania now living with metastatic disease.  We asked her to share a little about her journey and what has helped her along the way.  Amanda will be writing a quarterly blog for YSC.  

In 2006, at the age of 28, when I laid on my 4yr old daughter’s bedroom floor so that the transition to her new bedroom in our new house wasn’t scary for her, I accidently brushed my breast with my hand and felt what seemed like a grape under my skin.  Little did I know, it was going to lead me on a journey that would bring so much good to my life. After the initial shock of hearing the words YOU HAVE CANCER and learning about treatment options and side effects, I knew that I needed to reflect on my life and remember what got me to where I am in my life today:  My Attitude; My Determination; My Friends; and My Family.

My Attitude – I’m sure that my mom could vouch that my attitude would not let cancer have a chance.  Sorry mom for everything that I put you through growing up… whether it was my stubbornness, my positive mind frame, or not letting anyone or anything tell me how or what to do.

My Determination – When I was growing up, I played sports.  In the beginning, I wasn’t very good, but I was tall so I made a good basketball player. During my sophomore year of high school, my Coach instilled in me that I needed to keep practicing and seek out any opportunity to shoot hoops to make me a better player. During the summer between my sophomore and junior years, that is what I did. Through my work and determination, I became a top scorer on my team, set a school record for foul shot percentage, my school finally made a post-season debut in its conference, and I received 20 recruitment letters from colleges to play basketball.

Mets Blog 1

“Buss’s Boobies,” Amanda’s friends, family at Annual Women’s 5k Walk in Allentown.

My Friends – How they showed up: going with me to a medical appointment, a biopsy of my breast, a night out, a Toby Keith concert, a trip to Jamaica and eating fresh pineapple, trying to find a day of the week and a time that fits both our schedules so that we can stay on an exercise plan, a summer tubing party in Lancaster, or a friend that offers to hold the bucket because we both know that I held it plenty of times for her, my friends, or as I like to refer to them as my “boobies” have always been there to offer a hand and to let me know that cancer didn’t have much of a chance.

My Family – The ones that kept my mind at ease, tolerated my chemo crankiness and helped me build the foundation that I needed to get over all the bumps and barriers that life has thrown at me.

I will be the first to admit that the treatments were not fun, and the side effects I endured sucked.  But I knew that they were just another bump in the road or foul on the court that I would have to look back on to become a stronger, wiser model for young women in the future. My life continued on as a mom, sister, girlfriend, daughter, and the fact that I was diagnosed with cancer did not stop me from living life because I did not let it. Instead, I used it to help me help others. I became involved with the American Cancer Society, Young Survival Coalition, the Cancer Support Community, the Pediatric Cancer Foundation of the Lehigh Valley, For Pete’s Sake – a cancer respite vacation foundation, and the Get In Touch Foundation — A FREE program to help educate girls in grades 5-12 about breast health. My involvement in all of these programs opened my eyes and led me to meet so many inspiring women and gave me a list of amazing opportunities that I am now able to share with others and help them along their journey.

Mets Blog 2

Amanda and husband Mark.

But this wasn’t the end of my cancer journey.  In 2010, cancer made another attempt to sideline me. Being almost 5 years out from my initial diagnosis, I had no thought in my mind that I would have cancer again. Awakened in the middle of the night from a horrible pain in my side, I drove myself to the hospital and was sent home with a diagnosis of kidney stones. I endured a torturous week of jury duty with this pain, and the following Sunday, when doubled over in pain in the middle of the aisle at Giant, I had Mark (my boyfriend, now husband) drop me off at the ER. After further review, the kidney stones ended up as tumors…in three-fourths of my liver, in my pancreas, wrapped around my spinal cord and in my bones. Later, I found out the cancer was also in my ovaries. Wow! I thought…what other cancer organizations are there for me to get involved with?

Taking what I learned the first time around, the positive attitude that I kept, the determination and strength that got me through the side effects, and the support of my family and friends there was no doubt in my mind that the cancer didn’t have what was needed to knock me down. I can say that I secretly thanked cancer this time around because it led to a marriage proposal, a free dress from Kleinfeld’s Bridal, a fully expense-paid family respite vacation, appearance in some TV commercials and a stronger bond with the man that has completed my life.

So, now I know I will face this disease for the rest of my life.  But it knows that it will not beat me. It may take up space in my body, but it does not get my love, my healthy cells or my mind.




Comments (2)

The EARLY Act 5 Years Later: Reauthorization and What It Means for Young Women

EARLY ActAlthough you may not have heard it on the news, a piece of legislation important to young women generally and to young women diagnosed with breast cancer in particular was introduced last week. On July 24, Representatives Debbie Wasserman Schultz (D-FL) and Renee Ellmers (R-NC), along with Senators Amy Klobuchar (D-MN) and David Vitter (R-LA), introduced bills in the House (HR 5185) and Senate (S 2655) to reauthorize the Young Women’s Breast Health Education and Awareness Requires Learning Young Act of 2009, known as the EARLY Act.


The EARLY Act is a unique piece of legislation which was initially introduced in 2009. For the first time in legislative history, the needs and issues of young women diagnosed with breast cancer were recognized. It became law in 2010 and, acting through the U.S. Centers for Disease and Control Prevention (CDC), created an education and outreach campaign to young women and their health care providers about breast cancer risk. In the four years since its passage, the EARLY Act has allowed the CDC to identify gaps in education among young women and health care providers, provide grants to breast cancer organizations that assist young women, and create campaigns to raise awareness that a woman can be diagnosed with breast cancer at any age. A joint statement from 2009 provides more details on the background of the legislation, its importance and need.

The 2009 EARLY Act legislation called for its programs to run from 2010 through the end of 2014. In order to continue this important work, Congress must pass legislation reauthorizing the EARLY Act. The reauthorization legislation introduced last week would renew the EARLY Act in 2015 and continue its programs through 2019.

Why is the EARLY Act important?

A unique and important aspect of the EARLY Act is its provision to provide education and information to healthcare providers about the risk of breast cancer in young women. How many of us were told by healthcare providers that we were “too young” to be diagnosed with breast cancer? For how many young women did this “you’re too young” sentiment result in a delayed, sometimes very delayed, diagnosis? The EARLY Act attempts to overcome this gap in physician knowledge by educating them that breast cancer is a disease with no age restrictions. It also educates young women and the public about the possibility of breast cancer in young women.

In addition, this legislation recognizes that young women diagnosed with breast cancer have issues and concerns that are different from their older counterparts. It provided funding for organizations to provide support services to meet their unique needs.

What’s Next?

The EARLY Act Reauthorization Bill has been sent to its respective committees, the Energy and Commerce Committee on the House side and the Health, Education, Labor and Pensions Committee on the Senate side. Since this Bill is a reauthorization of an existing successful program and requires no new funding, the hope is that Congress will pass it easily and quickly. We encourage you to contact your Representative and Senators and encourage them to co-sponsor and support this legislation.

In a recent press release, YSC, along with Susan G. Komen and Living Beyond Breast Cancer, applauded the introduction of the EARLY Act Reauthorization bill. YSC is especially appreciative of the members of Congress who recognize the unique issues that young women with breast cancer face and believe strongly in the need for public education about the reality of the disease. We thank them for their support, dedication, and efforts on behalf of young women diagnosed with breast cancer.


Leave a comment

A New Bond Becomes a Strong Bond

YSC Summit and SymposiumsMany young women who are diagnosed with breast cancer feel alone.  Even for those with supportive families and friends, there’s sometimes a longing to connect with women who “get it.” To help alleviate this isolation, Young Survival Coalition will host the 2015 national summit and regional symposiums to address the concerns and unique issues young women face.

Melanie was diagnosed with Triple Negative Breast Cancer in 2011 when she was 30 years old.  To her dismay, she didn’t receive a lot of support from her loved ones and no one accompanied her to chemotherapy treatments.  “I removed myself from a lot of people,” she says. “I became more of an isolated person because I felt like I wasn’t getting any help.“ Unable to find other young survivors in her city, Melanie felt it was important that she attend C4YW so she could meet other women she could relate to physically, mentally and emotionally.

When LaMonica was diagnosed with DCIS in 2012 at the age of 37, she was able to cope with her diagnosis because her family supported her and they often prayed together. Although LaMonica attended support groups, she wanted to ask questions but she kept to herself. “I just really went to listen,” she says.  “There was no one African American in my age group that I could relate to.” Instead, she conducted research to educate and encourage herself.  She decided to attend C4YW to establish some “sister connections” with other young women.

During the C4YW Conference in February 2014, which took place in Orlando, FL, breast cancer survivors Melanie from Nashville, TN and LaMonica from Akron, OH began their budding friendship.

Both women look forward to the possibility of connecting in person during the #YSC2015 Summit in Houston, TX in March 6-8, 2015.

(L-R, Melanie and LaMonica at the Cancer and Careers Conference)

(L-R, Melanie and LaMonica at the Cancer and Careers Conference)

While waiting for the shuttle bus to take them from the airport to the conference hotel, Melanie and LaMonica started talking and realized they had a lot in common. “We just clicked. It was like we were friends forever,” recalls Melanie.

LaMonica was relieved to meet Melanie because she was visiting a new city. “I just felt really comfortable. I was able to finally connect with somebody who experienced breast cancer as a single mother.”

Upon arriving at the conference, LaMonica and Melanie were amazed by the hundreds of other young women they encountered.

“I already felt that breast cancer patients or survivors are already in their own little world.  I had visited a different type of world,” says Melanie.

Both women were empowered by the speakers, workshops, resources and the testimonials of other survivors at the conference.

“It was good to hear how other women overcame with work and family and kids. How they coped and what they did to get through it,“ said LaMonica.

Upon returning home from the conference, Melanie and LaMonica communicate with each other often usually through text messages.  They share information about resources they’ve found and they discuss how they’re relating in their daily lives. In June, they both attended the Cancer and Careers Conference in New York City of which YSC is a community partner.  This was another great opportunity for them to gain more knowledge and spend time together.  Melanie feels that LaMonica is the support that she needs to help her along her breast cancer journey: “She is a sweet person, a wonderful individual,” she said.  “We have a bond that’s unbreakable.”



Comment (1)
Categories: YSC SYNC - Survivors

Surviving Science?

Tracy Leduc's Poster "Research Think Tank: A Model of Survivor-Scientist Collaboration"

Tracy Leduc’s Poster “Research Think Tank: A Model of Survivor-Scientist Collaboration”

Last December, a friend of mine who shares my interest in breast cancer research suggested that I apply for the Scientist – Survivor Program (SSP) at the annual conference of the American Association for Cancer Research (AACR). Having been through treatment for breast cancer back in 2006, I already thought of myself as a “scientist survivor,” (e.g. someone who managed to survive despite what the scientists did to me).   I was intrigued enough to look into the program, and I’m really glad I did. The program brings survivors and patient advocates of all types of cancer together with cancer researchers from the entire research spectrum to maximize the advocates’ experience at the AACR conference.

The goal of the SSP is to educate advocates about the current state of cancer research. This year, one of the central topics of the conference was immunology. While researchers are using different approaches, all are working to harness the body’s own immune system to attack cancer cells. Researchers reported on some great successes with melanoma and various blood cancers, but the same strategies have not worked quite as well with other cancers. The goal now is to find out why that is and determine how to replicate these good results.

Another area that got a lot of attention was what I call “real-time medicine.” With breast cancer, most patients have a biopsy at or shortly after diagnosis and treatment decisions are made based on that biopsy. If the cancer later metastasizes or recurs, rarely is there ever a new biopsy. Instead, treatment decisions are usually based on the assumption that the biology of the recurrence or the metastasis is the same as the original tumor. This is assumed even though researchers know that cancer cells may have changed over time. However, several researchers are working on finding ways to make treatment more responsive to the changing cancer cells. They are drawing blood to obtain circulating tumor cells (CTCs) at numerous times during treatment, analyzing the characteristics of those CTCs, and then using that information to determine whether a particular treatment is working or whether a different treatment regimen might be more effective. Thus, cancer treatment can respond in “real time” to changes in the cancer cells. While this research is still in its preliminary stages, it shows great promise as a way to make cancer treatments more effective.

In addition to attending sessions open to all attendees, SSP advocates also had the chance to attend special advocate-only sessions with world-renowned researchers that were intended to give the advocates a better understanding of specific research areas and topics, as well as to explain concepts we were hearing about in language a layperson could understand. Topics included immunology, the problem of dealing with “big data,” advances in gene sequencing, the biomechanics of cancer, and genomics.

The SSP, however, is not just about sitting and listening to others. Advocates become participants in the conference by presenting posters about their advocacy work at two poster sessions. Teams of advocates and scientists worked together to answer “challenge questions” that addressed broad, cutting-edge issues relating to cancer research. Advocates also spent an evening participating in a mock tumor board based on several real cases.

I will admit that there were times during the conference that I felt overwhelmed. The size of the conference was intimidating, and I sometimes felt like I had been dropped onto a new planet where everyone was speaking a different language. I learned that I can create and present a poster without using glitter and glue. I also learned that I can prepare a PowerPoint presentation on the fly. More importantly, I learned that I can not only attend a scientific conference, but also actively participate in one. That made me truly a Scientist-Survivor.

 Tracy Leduc is an 8-year breast cancer survivor.  She focuses her volunteer work on breast cancer research advocacy and spends her vacation time attending scientific conferences.  She was an advocate member of the YSC Research Think Tank.

Leave a comment

Breaking News from ASCO 2014

ASCOEach year, new cancer-related study results and data are released at the ASCO (American Society of Clinical Oncology) annual meeting held in Chicago. Today at ASCO 2014, long-awaited data from the SOFT and TEXT trials was released and these results may impact the treatment of young women diagnosed with early stage hormone receptor positive breast cancer. The importance of this data was made apparent by its inclusion in a plenary session oral presentation, which is reserved for only the most significant trial results.

The SOFT and TEXT trials compared an aromatase inhibitor – exemestane – to tamoxifen in early stage hormone receptor positive breast cancer, along with ovarian suppression. At a median follow-up of 5.7 years, the studies show that those participants receiving exemestane along with ovarian function suppression had a significantly reduced disease-free survival of 91.1% vs. 87.3% on tamoxifen and ovarian suppression.   The breast cancer-free interval also shows an advantage for the exemestane arm, 92.8% vs. 88.8%. There were 4,690 women in the combined study results. You can download the original study at at no cost.

You should know:

–   20% of the study participants were under 40 years old
–   the median age was 43 years old
–   36% had tumors larger than 2 cm and 42% had positive lymph nodes
–   ovarian function suppression was achieved by triptorelin (an injection that shuts down the ovaries) or, after six months, oophorectomy or ovarian irradiation
–   overall survival benefit cannot be determined at this time – it’s too soon!
–   side effects were mostly similar between the two arms (depression, hot flashes, musculoskeletal aches and pains, sexual side effects, osteoporosis) , but a little more severe in the exemestane group (31%) versus the tamoxifen group (29%).   The tamoxifen group had higher incidence of thromboembolism (blood clot) and urinary incontinence.
–   stopping treatment early occurred more in the exemestane group (15%) vs. tamoxifen (11%).
–   more data on the tamoxifen only arm (without ovarian suppression) is expected to be reported at the San Antonio Breast Cancer Symposium in December


More Background

The SOFT (Suppression of Ovarian Function plus Tamoxifen or Exemestane) trial had three arms comparing the use of tamoxifen only, tamoxifen plus ovarian suppression, and exemestane plus ovarian suppression in premenopausal women with hormone receptor positive breast cancer. Ovarian suppression is the shutting down of a woman’s ovaries either by removing them, radiating them, or giving regular injections to stop their functioning. Tamoxifen works in premenopausal women by blocking the estrogen receptor and it is currently the standard of care in the United States. Exemestane is an aromatase inhibitor which blocks the production of estrogen in postmenopausal women.

TEXT (Tamoxifen and Exemestane Trial) contained two arms comparing ovarian suppression using an injection of triptorelin plus tamoxifen for five years versus ovarian suppression (using triptorelin) plus exemestane for five years. Ultimately, these trials hope to shed light on whether ovarian suppression is beneficial in premenopausal women and if so, which medication (tamoxifen or exemestane) should be prescribed with it.

The studies enrolled women with breast cancer between November 2003 and April 2011 at 510 centers in 27 countries.

Reported by Diana Chingos, a survivor of early onset breast cancer and a member of the Young Survival Coalition Research Think Tank. She lives in Los Angeles.



Leave a comment