A Survivor’s Effort to Avoid Toxic Chemicals in Everyday Life

BPA FreeWhen I got diagnosed with breast cancer during the final month of my first pregnancy, hormones took on a new importance in my life. My doctors worried the estrogen flooding my body during pregnancy had fueled my tumor’s growth. They warned that chemo might shut down my body’s reproductive hormones and my ability to have another child.

Two years later, I began monitoring those hormones and was overjoyed when I learned I was pregnant with a little girl. Now, 10 years after my diagnosis, I am considering having my ovaries taken out in order to remove these engines of estrogen production—even though I know I can’t take hormone therapy to help me through the throes of menopause.
I work hard to stay healthy and protect myself from cancer triggers. But through my work at an environmental organization, I have learned not all hormone-related threats come from inside our bodies. Some come from chemicals found in the air we breathe, the water we drink, and the consumer products we use every day.  Many of these chemicals are known to mimic estrogen, and disrupt the development of breast tissue. Almost none of them are regulated by the government.

This has potentially grave consequences for women and girls. Mammary glands are the only body part that changes structure over time, and this extended development is guided by hormones. When toxic chemicals disrupt this delicate form of communication, the breast can get the wrong message and start restructuring in ways that lay the groundwork for cancer.

Take Bisphenol A (BPA). BPA is a chemical found in plastic bottles, canned foods and baby toys. It is so common that more than 90 percent of Americans have residues of the chemical in their bodies, according to the Centers for Disease Control. It is also a synthetic form of estrogen and has been shown to cause normal breast cells to behave like cancer cells and has been linked to prostate cancer, lower sperm counts, and early puberty.

Polycyclic aromatic hydrocarbons (PAHs) are another group of chemicals known to mimic estrogen.  PAHs are commonly found in soot—air pollution from burning coal, oil and gasoline. Some PAHs have been shown to cause mammary tumors in rats and to interfere with DNA repair in cells. And several epidemiological studies have linked PAH exposure to increased risk for breast cancer in women.

Similar estrogenic chemicals are found in pesticides and weed killers such as atrazine. Atrazine was banned in the European Union because of its potential to harm human health, but more than 75 million pounds are used in the United States every year and atrazine is frequently found in drinking water during growing seasons. Atrazine is a known hormone disruptor, and some studies have linked it to increased risks for breast cancer.

As someone who avoids eating tofu in order to reduce my exposure to estrogen, I find it alarming we are exposed to so many sources of synthetic hormones every day. But the more we learn, the more we can protect ourselves. We can buy organic produce to avoid pesticides like atrazine. We can use cosmetics free of toxic preservatives. And we can heat and store our food in glass instead of plastic. The Breast Cancer Fund has a terrific set of tips for avoiding hazardous chemicals.

But shopping alone can’t reduce all the risk, since we don’t always know where these chemicals may be lurking. There are more than 80,000 chemicals used in the United States, but the Environmental Protection Agency has required only 200 of them to be tested and only 5 to be regulated. It’s time the government stepped in and demanded manufacturers prove their ingredients pose no harm.

I will never know if toxic chemicals contributed to my tumor. But I do know that if reducing the amount of these chemicals in our lives will shield other women from the anguish of this disease, we must start demanding companies clean up their act now.

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Categories: Guest Bloggers

Upcoming Webinar – Rights in the Workplace: How To Navigate my Breast Cancer Diagnosis

Click to enlarge.

Click to enlarge.

Maintaining a regular work schedule after a breast cancer diagnosis can create a sense of normalcy and purpose for many young women. However, learning and understanding your rights in the workplace may feel confusing and unclear. In YSC’s upcoming webinar, S. Beth Stephens, Staff Attorney for the Breast Cancer Legal Project at the Atlanta Legal Aid Society, Inc., will explore these issues and many more. Ms. Stephens previously guest blogged for YSC on the topic of Navigating Breast Cancer and Employment.

Webinar Details:

Title: Rights in the Workplace: How to Navigate My Breast Cancer Diagnosis

Thursday, January 31, 2013: 7:30-8:30 p.m. EST

Registration link:

https://www1.gotomeeting.com/register/740114832

Speaker: S. Beth Stephens, Attorney at Law; Atlanta Legal Aid Society

This webinar will cover a basic overview of the Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA). Additionally, we will answer the questions:

- What are my rights and the rights of my caregiver to take time off of work?
- What do I have to disclose to an employer about my breast cancer diagnosis
- What are my rights when returning to work?
- How do I ask for accommodations to be able to do my job after a breast cancer diagnosis?

 

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Categories: Guest Bloggers

YSC Announces State Leader Program

We are 1 YSC.

We are 1 YSC.

It brings me great pleasure to announce the rollout of YSC’s State Leader Program, along with the names of our new State Leaders. This is a big deal!!

The State Leader program will link a regional network of experienced volunteer leaders who are committed to YSC’s mission together for the very first time!

As YSC becomes 1 YSC – State Leaders will act as THE link between YSC’s local and statewide communities (survivors, volunteers, & health care providers) and the YSC Regional Field Manager staff. Their contributions will also include identifying state resources, joining other key leaders on a Regional Leader Council, and contributing to outreach, education and awareness activities throughout their region.

These seasoned volunteers have shown an outstanding commitment to YSC’s mission. Their experience, skills and talents will have a significant impact on helping YSC reach even more young woman diagnosed with breast cancer in their region.

Please join me in congratulating these remarkable women and thanking them for all they do – each and every day – to ensure no young woman affected by breast cancer ever has to feel alone.

Their leadership and dedication to YSC’s mission is worthy of extraordinary recognition – since without committed volunteers like these individuals – we would be unable to support as many young women with breast cancer as we do! THANK YOU!!!

SOUTH MIDWEST WEST NORTHEAST
Texas Michigan California New Hampshire
Michelle Piña Amos Maureen Parrish Lissette Averhoff Jennifer Beaudet
Sandy Castillo Ellen Schwerin
Missouri Amanda Nixon Pennsylvania
South Carolina Kristin Ainsworth Rose Kristin Graham Jodi Inverso
Libby Seabrook Brown Angela McCourt Kim Hagerich
Shari Payne Kaple Wisconsin
Laura Kuecker Washington New Jersey
Florida Judy Haley Diana Di Mare
Linda Larkin Wendy Keating Victoria St. Martin
Karen Lawson
Georgia New York
Janice  Weaver Arizona Paulina Kashirsky
Felicia  Mahone Mikala Edwards Kate McGough
Mindy Carpenter
District of Columbia
Erin Price
Devin Boerm
Ohio
Melissa Richardson
Julie Klaski
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Congratulations Stacy and Lori!

YSC turns 15 years old this year!!! We will be celebrating throughout the entire year to recognize the hard work of SO many dedicated volunteers and staff. I feel honored to be able to take part in these acknowledgements, especially since they symbolize the hard work and dedication of so many young women with breast cancer across the country. The amazing volunteers and survivors in San Diego played a part … as did women in Atlanta … Duluth … Kansas City … Philadelphia … the list goes on … and on! There are so many people to thank and identify – we need an entire year to do it!

To kick off the festivities, I would like to pay homage to two spectacular women … Stacy Lewis and Lori Atkinson. Seven years ago this month, both of these outstanding women began their employment with YSC. As the organization turns 15 and we begin the year by commemorating this anniversary, we also start the year by hailing the achievements and long-standing tenure of these outstanding professionals. They have now BOTH been on staff longer than any other employees in YSC’s history.

That is something to celebrate!

 

Stacy Lewis, CHES, Chief Program Officer and Deputy Chief Executive

Stacy Lewis, CHES, Chief Program Officer and Deputy Chief Executive

Stacy Lewis started as YSC’s first Program Director on staff and she’s been leading us to greatness ever since! Stacy’s outgoing personality and brilliant mind is a driving force behind YSC’s solid reputation for delivering truthful and accurate data and materials. Stacy has built relationships with healthcare professionals, researchers and organizations that have strengthened YSC’s ability to support young women with breast cancer across the country. A few years after she joined YSC, Stacy was promoted to VP of Programming to take advantage of her strategic planning and management skills, especially with regard to the management of C4YW – the largest conference dedicated to young women with breast cancer in the world. One of the first things I noticed when I was hired as YSC’s CEO was Stacy’s incredible knowledge of science and survivorship issues – and I promptly promoted her to Chief Program Officer/Deputy Chief Executive. I truly believe that YSC is a smarter and better organization due to Stacy’s contributions. It is a great honor to be able to highlight her seven years of service to YSC. Thank you, Stacy!!!

 

 

Lori Atkinson, Chief Community Officer

Lori Atkinson, Chief Community Officer

Lori Atkinson began volunteering with YSC in 2000, so her relationship with YSC actually began 13 years ago. Before she joined YSC’s staff, Lori served as its Volunteer Chair for Central Indiana, where she worked hard to build YSC’s reputation and reach young women in her local community. In 2006, Lori was hired as YSC’s first Affiliate Manager and she diligently supported women around the country who were a part of an affiliate. There are very few YSC members who don’t know Lori – if you’re acquainted with her, I’m sure you know she’s one of the kindest and hardest working people there is. A few years after that, Lori was promoted to Affiliate Director of Development to foster YSC’s growing affiliate structure to help more young women with breast cancer throughout the United States. In my first year working at YSC, Lori and I worked very closely together to analyze the current affiliate model and determine how we could strengthen it. Everything Lori does focuses on the critical issue of how YSC can better reach and support young women affected by breast cancer. I know I can rely on her to always put our volunteers and survivors first in everything she does … always! In 2012, I was proud to promote Lori to Chief Community Officer of YSC. Her commitment to both YSC and the success of our volunteer programs is exceptional. I thank my lucky stars that back in 2000 YSC was there to not only support Lori in her journey as a young survivor, but also keep her actively engaged with YSC 13 years later (WOW!!!). Thank you, Lori!!!

 

These two women are the brains of the programmatic work that YSC is well known for. They both care deeply about our community and work tirelessly to ensure that every young women diagnosed with breast cancer in the U.S. knows we are here and that she’s a part of our family.

As we embark upon our 15 year anniversary today, please join me in thanking and acknowledging Stacy Lewis and Lori Atkinson for seven years of service to YSC. If one of them has touched your life or done something special for you during the past seven years, please consider leaving a comment to express your appreciation.

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Walking the Walk, Not Just Talking the Talk

(from left to right) YSC Senior National Programs Manager Megan McCann, YSC Volunteer/Advocate Amanda Nixon and me at the YSC table at the San Antonio Breast Cancer Symposium.

The San Antonio Breast Cancer Symposium (SABCS) is a BEAST of a medical conference. Everything about it — from the cavernous Henry Gonzales convention center to the incredible 200+ page program book — is big. Texas style. Five days of exhibits, sessions, advocacy briefings and networking. Almost 8,000 physicians, researchers and advocates from over 100 countries, converge in one place every year to get the latest, breaking news on clinical trials and breast cancer treatment.

As a survivor, patient advocate (patient advocates learn about the most recent breast cancer research so they can disseminate the information to their local organizations and constituents) and exhibitor, it was my privilege to represent YSC. Thankfully, I wasn’t alone in this task. My fellow YSC colleagues Megan McCann, Stacy Lewis and Jenna Glazer were there too. I expected people to wander by YSC’s table looking for giveaway pins, pens, etc. Instead, medical professionals from around the country … and the globe, stopped to take in our visuals, brochures, and the young women’s faces they saw on our posters. I spoke with breast surgeons, oncologists, nurses and patient navigators from all over the U.S. and interacted with people from Australia, Russia, Germany, Brazil, England, and South Africa. They all wanted to learn more about YSC and the women we serve.

At the end of each day, the Alamo Breast Cancer Foundation organizes a Hot Topics Mentor Session. Here an expert panel breaks down the day’s findings. The true clinical implications of the ATLAS (Adjuvant Tamoxifen Longer Against Shorter) trial were discussed. Doctors Julie Gralow (Seattle, Fred Hutchinson Cancer Center) and Judy Garber (Boston, Dana Farber) were asked how the findings might affect their treatment decisions. They immediately responded to the rumblings (many of the patient advocates were struggling with the results — the benefit of five more years of Tamoxifen, versus five more years of debilitating side effects). Quality vs. quantity of life became the hot topic! The session highlighted a very personal treatment choice between a young woman and her physician. FYI, I was very excited to discover that Dr. Gralow will be presenting a plenary session entitled, Young Women and Breast Cancer: the Future of Care at C4YW, the largest internal conference for young women affected by breast cancer that YSC co-hosts, which will take place February 22-24 in Bellevue, WA (on Seattle’s Eastside).

Triple negative (does not express the genes for estrogen receptor (ER), progesterone receptor (PR) or Her2/neu) and advanced breast cancer continue to challenge researchers. At the next Hot Topics discussion I attended, a young woman spoke passionately during the Q&A about her disappointment and concern with lack of research on triple negative breast cancer. Her passionate and heartbreaking argument ended with a call: Where is the plan? Why are we still discussing Tamoxifen after 20 years? It certainly made me think about the other side of the coin.

Other study findings of note: the better response to neoadjuvant chemotherapy (preliminary therapy, given before a main treatment like surgery) in young women versus older women; and the startling results from the UK START (Standardization of Breast Radiotherapy) trial which compared standard course radiation (six weeks), to short course (three weeks). The results showed equivalent outcomes with lower toxicity in the short course arm. Imagine the benefit to a young woman’s quality of life with a shortened radiation treatment cycle! Dr. Eric Winer (Boston, Dana Farber), acknowledged the findings, but injected a note of reason, and yes … humor. In a ringing voice, he stated, “Size still matters!” Size, in this case, referred to tumor size, of course! It reminded me of something I always read about cancer. Something so basic, yet life-saving: catch that tumor small … and early.

It was great to connect with Amanda Nixon, a stellar advocate from California with the Keep A Breast Foundation, and Sandy Castillo, a dynamite volunteer leader from Houston. Amanda shared these thoughts with me:

“Are we being over treated because we are younger? Who is paying attention to our fertility issues? Where is the sense of urgency?  But, I couldn’t help but feel hopeful for those diagnosed with early stage disease.  I really took SABCS as an opportunity to listen and learn from everyone around me.”

Time will tell if the results laid out at SABCS are working. But there IS activity, there IS movement. In fact, YSC continues to lead the charge. I feel honored to be a part of YSC’s upcoming Research Think Tank initiative, which will convene February 7-8 in Washington DC. Advocates and medical professionals from around the country will meet to refine a research agenda focused on issues critical to young survivors. So, I returned back to Ohio thankful for the opportunity to see this movement firsthand and encouraged by the researchers and physicians committed to walking the walk, and not just talking the talk.

Warmly,

Medha

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Categories: Guest Bloggers

YSC Rocked 2012!

 

Wow! What a year! So much happened, yet I feel like the year went by in a flash.

There are exciting things coming to YSC in 2013. Before we dive into where we are going, we should celebrate where we have been. 

 

Here is my 2012 Recap:

 

1 YSC, Face 2 Face

In the summer of 2012, I announced the launch of YSC’s “1 YSC” campaign to invite all young women with breast cancer to stand together as one united community. I spoke at the Affiliate Summit in July and began an open four-month discussion with our current volunteer leaders about how we would do this together. As a result, together as 1 YSC, we developed solutions to create a new community of engaged volunteers and survivors that we’ll be rolling out in 2013. Check out the video that kicked off this initiative.

 

Post-Treatment Navigator Released

BIG NEWS!!!! This year we released What’s Next? A Young Woman’s Post-Treatment Navigator, a guidebook based on a 2010 survey to 300 women in the YSC community. This insightful book, the third installment in YSC’s navigator series, explores a wide range of topics including: potential long-term side effects like chemo brain, early menopause, lymphedema and weight management; understanding emotions and relationships changes; living a healthy lifestyle, and more. This is a must read! Click here to download the PDF or order a free print copy.

 

East Coast Tour de Pink Sells Out!

Two hundred three-day riders and more than 50 one-day cyclists signed up for the 2012 YSC East Coast Tour de Pink. I rode all 200 miles for the first time and it was INCREDIBLE!!! Our Tour de Pink bike rides this year raised over $1.2 million and had 1,400 participants overall, including 200 survivors. Check out pictures here. I took my body back and kicked cancer’s butt!!! If you have not seen the amazing videos from this years’ ride, watch them. If you haven’t yet experienced one of our Tour de Pink events, I’m confident you’ll want to join us in 2013 after viewing these videos.

 

YSC’s YouTube Channel is Launched

YSC is now on YouYube. Have you subscribed to our channel? It rocks! Check out the new “WHY I RIDE” video series where various people talk about what inspires them to climb on a bike and ride 200 miles in Tour de Pink.

 

31 Faces, 31 Days BCAM Campaign

Breast cancer isn’t pretty and it’s not pink … That’s what we told the world this October! YSC highlighted 31 young survivors’ stories that represented the various challenges young women with breast cancer face and it was a huge success! Have you read these remarkable women’s stories? They are powerful and inspiring!

 

4th Annual Congressional Women’s Softball Game

I was honored to throw out the first pitch at the 4th annual bipartisan Congressional Women’s softball game in D.C., where the women of Congress play the women from the Washington Press Corps to raise awareness that young women can and do get breast cancer. The Congressional team lost this year, but I can’t wait to see what happens in 2013! Check out Rep. Debbie Wasserman Shultz and Rep. Jo Ann Emerson making an announcement about the game on the House floor.

 

NYC & Kansas City Host the Largest In Living Pink Events, in YSC History

With more than 600 guests, the national New York In Living Pink gala raised over $250,000, including a text donation campaign that raised $10,000 in less than three minutes. Honorees included YSC founding member, Tour de Pink co-founder and board president Lisa J. Frank, Dunnan Edell from CCA Industries, and Genomic Health. The Kansas City event hosted more than 400 attendees, raised $91,0000 and honored YSC survivor Brandi Palmer and John Michael Quinn, M.D. We have two awesome videos that were taken at this year’s events!

 

A New Partnership with Keep A Breast

YSC recently created a formal partnership with the Keep A Breast Foundation (KAB), based in Southern California, for a Treasured Chest program. This program is all about respecting the beauty of a woman’s body and I am grateful to partner with such an outstanding organization on this very cool initiative … check out Keep A Breast founder Shaney Jo and I discussing it here.

 

YSC’s New Blog

We launched YSC’s first-ever blog in May and it has been an extraordinary success! I’ve been chronicling my experiences training for my first Tour de Pink rides, leading YSC, navigating my “new normal” as a young breast cancer survivor, as well as providing general YSC updates and news. We’ve also had phenomenal guest bloggers, ranging from YSC staff and survivors to advocates, legal experts and medical providers. Thank you to everyone for helping the blog become part of YSC’s culture!

 

New Partnerships!

This was an exceptional year for YSC joining forces with noteworthy partners such as Oakley, Harley-Davidson, Emergen-C, Ford Warriors in Pink and the Athleta Iron Girl event series. I’m sure most of you saw the national magazine ads that Oakley secured to promote YSC … they were sensational! I’m thrilled that sales from Emergen-C Pink (pink lemonade flavor) will help provide support services for young women with breast cancer along with Harley-Davidson’s MotorClothes® Pink Label Collection. We also partnered with the Athleta Iron Girl event series and Ford Warriors in Pink this year – which was wonderful! I can’t wait to see what happens in 2013!

 

YSC’s Program Team Wins Best Abstract at BCY1

In the fall, YSC presented four posters at the International Conference for Young Women with Breast Cancer (BCY1) in Dublin, Ireland. Not only was it terrific that YSC was able to attend and collaborate with others around the world who are decided to the same mission, one of our submissions, entitled “Young and Metastastic: Addressing the Unique Needs of Advanced Breast Cancer in Young Women,” was selected as a best abstract and presented orally by Stacy Lewis, YSC’s chief program officer and deputy chief executive, to an international community of advocates, researchers and medical providers. Kudos to Stacy and her team!

 

A Petition Signature Drive to End Breast Cancer

YSC’s mission is to support young women who have been diagnosed with breast cancer, but we also want to do everything in our power to help end this disease once and for all. To show that we are serious about that commitment, YSC partnered with the National Breast Cancer Coalition (NBCC) to help obtain signatures for its petition to end breast cancer by 2020. I am proud to say the YSC community collected over 6,300 signatures in two months to add to NBCC’s petition to the President. Thank you to everyone who signed and/or helped obtain signatures to represent young women affected by breast cancer in this effort.

 

Three New Departments are Created!

New staff, new responsibilities and a new level of commitment happened in 2012. This year, YSC reorganized itself and created three new departments: Community Engagement, Technology and Marketing/Communications (Marcom). The new positions, departments and responsibilities of the talented staff will ensure that YSC is able to fulfill its mission and reach even more young women with breast cancer than ever before!

 

I attended my first C4YW!

Did you know that the C4YW conference we co-host is the largest conference for young women with breast cancer in the world?! No, I am not kidding! This year was my first time attending and as a survivor, I was blown away. To be around almost 1,000 young women just like me is life changing. I can’t wait until February 2013 – the conference will be on the West Coast for the first time. Have you registered yet?

 

Wow … 2012 has been a magnificent year! Each and every one of you played a part in these achievements – I thank you for that.

I am enthusiastic about what the future holds for YSC – but most important, I’m grateful YSC is here to support every young woman affected by breast cancer so she knows she’s not alone. That’s something to toast to!

 

Happy New Year!

 

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Full of Cheer

Isn’t this supposed to be the time of year that’s “full of cheer”? I don’t know about you, but these days I feel like night time comes right after lunch … and then there’s all the Christmas stuff. It’s sort of like “pink” in October … it’s everywhere and you can’t get away from it.

For me, Christmas has become a reminder of the way my life didn’t turn out because of breast cancer. Don’t get me wrong, I know there are many women out there dealing with situations far worse than my own and I’m not complaining. But when I see that darling little girl eagerly waiting to sit on Santa Claus’ lap, it feels like a punch in my stomach … it’s a reminder of the future I envisioned for myself  and the family I thought I’d have by now. Even I, the CEO of YSC, feel scared as I navigate my “new normal” as a young breast cancer survivor, especially this time of year.

But, around the corner is a new year … and that means C4YW!

C4YW is the largest gathering of young women diagnosed with breast cancer in the world … and for the first time ever, it will be on the West Coast in 2013 (February 22-24)!

For me, C4YW is a reset button … It’s always at the beginning of the year and young women with breast cancer from around the world come together to reaffirm their determination of survival, remind themselves they are not alone and learn about the latest advances in research and medicine that occurred since the last C4YW.

- If you have attended before, you know what I mean … and maybe this is the year for you to come back.

- If you are newly diagnosed, this event will change your life – you will never look at your survivorship the same way.

- If you’ve thought about going for a few years, but never actually did … now is the time!

- If you care for or support a young woman affected by breast cancer, C4YW has workshops just for you!

If you want to attend, but feel reluctant because you don’t know a soul – many attendees come to C4YW by themselves and leave with lifelong friends. Here’s an example: Mikala, diagnosed at 25, attended her first C4YW conference last year and has since become close friends with five other survivors in their 20s that she met there. Other women you’ll meet at C4YW are Lori, who supported herself by teaching belly dancing following her diagnosis and now conducts a belly dancing class at C4YW to help other survivors feel sexy. Nicole is YSC’s West Coast Regional Field Manager who lives in Seattle. She can’t wait to welcome you to town and introduce you to the other women who will be at C4YW!

For each of you looking forward to the holidays, I wish you and those you love an amazing celebration!

But for those of you who, like me, are struggling with the holidays and can’t wait for them to be over, I wish you peace and comfort. Maybe now is the time to sign up for C4YW and plan a fun getaway for early 2013 … the thought that I’ll see many of you the last weekend in February brings a smile to my face and makes me feel “full of cheer”!

P.S. There’s still time to apply for travel grants!!!

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Categories: YSC SYNC - Survivors

Treatment’s Over: What’s Next?

Breast cancer presents a deep disruption to the normal life course of young women because, even once treatment is over, they now face many new issues.  They are at the threshold of establishing their careers.  They may naturally be considering life partners and starting a family. They may face not being able to have children.  They ponder when to tell a potential partner that they are breast cancer survivors.

At Young Survival Coalition (YSC), we receive questions from women at all stages of their breast cancer journey, and what to expect from life after treatment is one of the most common topics that comes up. What side effects will linger? How will I feel emotionally? What does this mean for my sexuality and self-image?

A young woman may get many questions answered at follow-up medical visits, but as those appointments become less frequent, she may feel more anxious about what to look for and expect on her own. YSC continually strives to provide information to help support and inform young women in this phase of post-treatment and is proud to announce the release of our newest resource: What’s Next? A Young Woman’s Post-Treatment Navigator.

The creation of this guidebook was driven by a survey YSC administered in 2010. We were able to obtain feedback from almost 300 young women who’d completed treatment and many common themes emerged. As a result, What’s Next? explores a wide range of topics, including: potential long-term side effects like fatigue, chemo brain, early menopause, lymphedema and weight management; understanding emotions, self-image, fear of recurrence and relationship changes; living a healthy lifestyle; financial and career planning; and interactive worksheets for creating a treatment summary and survivorship care plan.

YSC is also excited to offer, for the first time, an e-version of the guidebook, in addition to print copies. To learn more about ordering or downloading What’s Next?, visit:

http://www.youngsurvival.org/programs/learn/educational-resources/post-treatment-navigator

Life after treatment may make a woman feel relieved, anxious, or both, but either way it is a time of change. YSC encourages our constituents to continue asking questions, seeking out support, and accessing available resources through programs like ResourceLink and SurvivorLink. We hope that What’s Next? will be a helpful tool in making that transition easier.

What’s Next? A Young Woman’s Post-Treatment Navigator is YSC’s most recent installment in the Navigator Series. The series aims to provide information for young women at all phases of breast cancer and currently includes the Newly Diagnosed Resource Kit and Treatment Navigator, as well as the Metastatic Navigator. A resource for long-term survivors is coming in 2013.


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Categories: Guest Bloggers

YSC Attends BCY1 Breast Cancer in Young Women Conference

Stacy Lewis, Anna Cluxton and me at the BCY1 Conference in Dublin.

Along with Chief Program Officer and Deputy Chief Executive Stacy Lewis, Ex Officio Board President Anna Cluxton, Medical Advisory Board members Dr. Ann Partridge and Dr. Judy Garber, I attended the BCY1 Breast Cancer in Young Women Conference November 8-10, 2012 in Dublin, Ireland. This three-day conference directed to medical practitioners and researchers focused solely on issues pertinent to young women (40 and under) diagnosed with breast cancer. Organized by the European School of Oncology (ESO), approximately 300 medical professionals and patient advocates from over 47 countries attended. YSC also presented four posters at this event which summarized our survey results and work on the Long-Term Survivor Guide, Post-Treatment Navigator, Metastatic Resource Kit, and Healthcare Provider Educational Program. One of our submissions, titled “Young and Metastatic: Addressing the Unique Needs of Advanced Breast Cancer in Young Women,” was selected as a best abstract and presented orally to the entire conference by Stacy Lewis.

 The conference debated whether the biology of breast cancer in young women is unique and whether more aggressive treatments should be ordered solely because a woman is “young.” While all speakers acknowledged that young women are more likely to be diagnosed with aggressive forms of breast cancer and have a worse prognosis than their older counterparts, it is not clear why this is occurring. Some speakers believed that the tumor itself is different in younger women, while others believe that the tumors are the same, but it is the surrounding microenvironment of the young woman which is different:  a “seed” vs. “soil” dispute. We heard presentations and updates on hereditary breast cancer, emerging technologies, surgery/radiotherapy/chemotherapy, use of bisphosphonates in the adjuvant setting, and metastatic disease. Quality of life issues including fertility, early menopause symptoms, relationship issues and pregnancy were also examined.

 A common theme that surfaced repeatedly during this conference: we just don’t know enough about this population of young patients and the best ways to treat them. In the young metastatic population in particular, the scarcity of data and the reluctance of trial sponsors to include younger women in their studies was noted.

 While many examples of research needed in this population were shared throughout the conference, one quandary in particular caught my attention because it is a decision that almost all young women diagnosed with breast cancer must confront: lumpectomy + radiation vs. mastectomy. Research shared at BCY1 said that with lumpectomy and radiation, younger women have local recurrence rates 9.2% higher than older women. Based on this research, mastectomy is commonly recommended for younger patients. However, the speaker was not aware of any research that looked at the recurrence rate with mastectomy in younger vs. older women and compared that recurrence rate to lumpectomy and radiation. It may be that local recurrence rates are higher in young women, no matter which surgery is chosen. It is simply not clear. In addition, although new radiation technologies should be safer, it will take time to determine whether this is true, especially for young women who will have a longer lifespan during which long-term side effects may arise.

Two aspects of this conference reassured me. First, it was encouraging to attend a high-level scientific conference where the focus was solely on young women and where quality of life issues were deemed worthy of scientific discussion. Second, it was wonderful to hear the praise from advocates and the medical community about the value of YSC and the good work we do.

BCY1 also reaffirmed for me the value and need for our upcoming YSC Research Think Tank. In 2001, YSC organized the first medical research symposium focused on young women and breast cancer.  The resulting white paper showed where gaps in knowledge existed.  But, these gaps persist today. A large amount of research is still desperately needed in our population of young women diagnosed with breast cancer. We simply must learn more so that our constituents have the information they need to make their best, informed choices. For our Think Tank, we have assembled teams of medical professionals and skilled advocates to focus on six core issues pertinent to our population:  risk factors unique to young women; pregnancy-associated breast cancer; treatment; metastases; fertility; and quality of life/survivorship. These workgroups are currently assessing what we do and do not know in these six target areas. At our in-person Think Tank meeting in February 2013, these workgroups will meet in person to debate and strategize. The outcome of this meeting will be a list of high priority research questions that will be published and presented to the research community, with the goal of improving the quality and quantity of life for young women diagnosed with breast cancer.

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Categories: Guest Bloggers

Screening Mammography in the News Again – Understanding the Research

Screening Mammography is in the News Again!  Published in the New England Journal of Medicine, “Effect of Three Decades of Screening Mammography on Breast Cancer Incidence,” by H. Gilbert Welch, Ph.D, and Archie Bleyer, Ph.D, this new research review shows that screening mammography only increases the amount of early-stage cancers detected and has not decreased the number of late-stage cancers found, as one would hope.  Instead of saving lives, it causes more than one million women to be treated for a disease that they never would have died from.

As an 18-year veteran of breast cancer survivorship, I resolved long ago that I can be a part of the solution or a part of continuing the problem.  There are so many people out there who are promoting myths.  In my own personal breast cancer advocacy work, I knew that before I sent a message, I wanted to make sure what I said was factually correct.  When I was first diagnosed with breast cancer I was told: “Early Detection Saves Lives.”  I believed it at first, until some of my friends started to die of the disease and I noticed some of them were diagnosed with smaller tumors and had a better prognosis than my own.  I began to better educate myself about what that statement about early detection meant and realized in our zest to say something empowering and helpful, we have perpetuated a myth.

This new research by Welch and Bleyer raises serious concerns about the value of screening mammography and clarifies that the effect on mortality rate is likely smaller, with the harm of overdiagnosis likely larger, than previously recognized.  This study is only related to screening and not diagnostic mammograms, where a woman (or man) has a mammogram to investigate whether an existing lump is cause for concern.  There is no debate about the usefulness of diagnostic mammograms.

Welch, from Dartmouth University, has explained his research findings in an easy-to-understand video. Please watch it!

One must consider the fact that there is an extraordinary cost to treating more than a million women for breast cancer.  Surgery, chemotherapy and radiation all cost a woman very much in her life.  They lose body parts, they are exposed to toxic chemicals and treatments, and they lose time with their family, from their job and doing all of the things they love best, while undergoing treatment.  They are put at risk for other diseases, as Robin Roberts was when she contracted myelodysplastic syndrome (MDS) after breast cancer treatment.  Some lose their jobs as a result of debilitating treatments.  Chemotherapy robs others of their fertility or sexual function.  Some women die from side effects of their treatment.  There is a cost to the treatment for breast cancer.

This research reinforces how important it is that we be a part of the solution and that solution involves moving beyond the search for early detection and moving into the cure for breast cancer.  Sign the petition to show that you believe we need to solve the real problem of breast cancer and that you would like the President of the United States to take a leadership position in helping us to end breast cancer.

In November of 2009, YSC responded to the U.S. Preventive Services Task Force’s then newly released recommendations on screening mammography. To learn more, read YSC’s statement.

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Categories: Guest Bloggers