YSC Research Think Tank Demands Change

Mar 14 avatar by Courtney Preusse, Survivor and RTT Participant; Research Advocate, Fred Hutchinson Cancer Research Center
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YSC’s Research Think Tank

“Patient advocacy” has become a buzz phrase in recent years within the research and medical communities. Grant review boards, such as the Department of Defense (DOD) and National Institutes of Health (NIH), have begun to invite a small handful of advocates to sit at the table and provide insight on future research priorities. The “big name” conferences such as American Society of Clinical Oncology (ASCO), San Antonio Breast Cancer Symposium and American Association for Cancer Research (AACR) now have patient-scientist programs to incorporate patients and/or advocates into the realm of their discussions.

Nevertheless, these large venues are designed to serve as catchalls for what many still consider a heterogeneous disease with one set of problems and one set of solutions. Young survivorship is treated as an after-thought — a side conversation in a small conference room in annex B of the convention center. Despite good intentions, these meetings have barely begun to skim the surface when it comes to exploring the unique challenges of managing breast health, breast cancer and survivorship in young women as compared to our older counterparts.
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Breast Cancer in Women Younger Than 40 Years
ASCO Annual Meeting
  

 

YSC, on the other, hand has tackled this problem head on.

Last month, YSC hosted a truly one-of-a-kind event in the Washington D.C. area, bringing together breast cancer scientists and advocates to discuss the most pressing issues surrounding how to improve upon the quantity and quality of life for young women with breast cancer. Even the nor’easter did not stop us!

Together, we formed a small yet vocal constituency representing universities, cancer centers and health care nonprofits from Boston to Texas to Seattle. Our voices echoed what has been said many times before: that young women are highly underrepresented in scientific literature and that more research is needed to progress further in this area.

The energy in the room was both contagious and magnetic as scientists and advocates explored ways to bridge the gaps in our understanding of this unique and wretched disease. In work groups, we thoroughly reviewed and summarized existing literature as it pertained to young women on six distinct topics: Quality of Life & Survivorship; Treatment; Metastases; Risk Factors; Fertility; and Pregnancy.  For two days, conversations buzzed around what we know, what we do not yet know and what we deemed to be top research priorities for YSC moving forward. Although each person’s motivation differed slightly, we were all there for the same reason: to do everything in our power to create a world without breast cancer.

During the symposium, we paid special tribute to Randi Rosenberg and Kat Werner, two legacies and driving forces behind research on breast cancer in young women. Through their contributions we have begun to develop a strong vision and advocacy plan for addressing the needs of younger women. A 2003  article, Breast Cancer in Women Younger Than 40 Years, co-authored by Randi and published in the International Journal of Fertility, attests to the lack of information about and available to young women — an area that sadly still remains poorly understood nearly a decade later. We intend to carry on Randi and Kat’s work, to push forward what was so near and dear to their hearts and, simply, to make them proud.

So, what’s next, you ask? Plenty!

YSC is in the process of compiling, reviewing, and discussing the information gleaned from this symposium.  This information will be used to draft a prioritized research agenda for young women with breast cancer and to author a State of the Evidence Report which will be submitted for publication in peer-reviewed journals in order to scream from the rooftops: “here we are!” and “pay attention!” In doing so, it is our hope that one day the research community will give us our due attention and truly, fully address the needs of young women with breast cancer.

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Categories: Guest Bloggers, The Business of Breast Cancer

C4YW 2013: Sisterhood is Forever

Mar 07 avatar by Jennifer Merschdorf, YSC CEO

Sisterhood-YSC-resized(Update 4.2.13: The “Sisterhood” t-shirt referenced in the second paragraph is now available for purchase in YSC’s online store)

There is really no way to describe it to those who have not attended. C4YW is a respite for those who have been diagnosed young with breast cancer … for three short days. It’s a place where you feel normal again. It’s a place where the things being discussed are somehow relevant to you. It’s a place where some of the most amazing women I have ever met come together and thrive together.

This year YSC sold a t-shirt at C4YW that said “Initiation sucks. Sisterhood is forever.” We just created this t-shirt and were curious if the women attending C4YW would like it. We had only three of these t-shirts left when the conference wrapped. While a t-shirt is just a shirt, it represents something powerful.

Referring to breast cancer as a “sisterhood” might seem odd to some, but when I think about the strong connections women make with other survivors through both YSC and this conference, sisterhood is the only word powerful enough to explain to other people what these women mean to each other … and to me personally, as a young survivor myself. None of us wanted to be here — but we are — and now we are bound, much like sisters.
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This was my second time attending C4YW. I was so impressed with the breakout session topics and speakers. The sex and intimacy workshop by Barbara Musser was awesome, and the Healthy Eating After Breast Cancer by Jennifer Adler was so informative. There was a Lesbian Women: Dating and Relationships session, as well as workshops geared toward the men who were there to support their partners.

In my opinion, our final plenary speakers, Nancy Buermeyer and Connie Engel from Breast Cancer Fund stole the show. As a woman who has worked in the environmental arena for years, the mission of Breast Cancer Fund is close to my heart. Nancy and Connie did an outstanding job of explaining environmental considerations and providing realistic steps we can all take to lower the impact and level of chemicals to which are our bodies are exposed. As they spoke, I looked around the room and noticed many of the 650 attendees were taking notes. It made me feel proud to see so many of my sisters engaged and know we can deliver such important and meaningful information to the young women we exist to serve.

In the end, we know that money makes the world go around. So, it’s important to give a shout out to our partners who made this amazing meeting possible: Susan G. Komen for the Cure, Eisai, Celgene, Amgen, Avon Foundation for Women, Breast Cancer Wellness, Genentech, Oakley and so many others.  Thank you!

Love also makes the world go around — I felt surrounded by it at C4YW and honored to be a part of this unique sisterhood.

Hope to see you in Florida next year (Orlando, February 21–23, 2014)!!!

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Categories: Survivor SYNC

YSC Responds to JAMA Article on Breast Cancer Incidence

Feb 26 avatar by Michelle Esser, Program Manager, Advocacy and Research

JAMAAn article published in the Journal of the American Medical Association (JAMA) on February 26, 2013, discusses the incidence of breast cancer in the United States and concludes that the number of young women presenting with metastatic disease at initial diagnosis has been increasing over time.  Given the subject matter of this article, YSC believes it is important to share with our constituents what this article says and what it means for young women diagnosed with breast cancer.

In “Incidence of Breast Cancer with Distant Involvement Among Women in the United States, 1976 to 2009,“ [hereinafter “JAMA article”] the authors examined data from the U.S. National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database to find trends among breast cancer diagnoses.  The authors observed a “small but statistically significant increase in incidence of breast cancer with distant involvement [metastasis to distant location such as bone, brain, lung, etc.] for women aged 25 to 39 years” of age. (JAMA article, at 805).  This increase accounted for the women who presented with metastatic (Stage IV) disease at time of initial diagnosis.  According to the SEER 9 database, the incidence of women in the U.S. aged 25 to 39 who presented with metastatic disease at initial diagnosis went from 1.53 per 100,000 women in 1976 to 2.9 per 100,000 women in 2009. The authors do not know the cause of these results and admit that further studies to corroborate their findings are necessary.

So what does this study mean to YSC, to young women diagnosed with breast cancer, and to healthy young women?  First, there is no cause for alarm or panic.  As the authors of this article state, their observations need to be corroborated and if that can be done, then further research is needed to ascertain why these numbers appear to be rising.  The JAMA article is a retrospective observational study, and as such, gives us very limited information.  This study does not and cannot explain why the distant diagnoses may be rising in young women.  As the authors admit, those diagnosed with distant disease at the time of their initial diagnosis is “relatively small.”  We also need to bear in mind the limitations of retrospective surveillance data.  SEER 9 data only captures 10% of the U.S. population from nine specific areas that may or may not be representative of the whole country.

How does this study affect young women already diagnosed with breast cancer?  It doesn’t.  This article does not address the risk of recurrence or metastasis for a young woman previously diagnosed with breast cancer.  Its findings applied to metastatic disease at initial diagnosis and not recurrence or spread of disease.

How does this study affect healthy young women?  The study does not warrant any change to YSC’s position that all young women should be familiar with their breasts, know what is normal for their body, and go to their healthcare provider if they find something that is not typical.  As the JAMA study revealed, the incidence of localized and regional disease in 25 to 39 year olds has not changed since the 1970s. From 2005-2009, the median age at diagnosis for cancer of the breast was 61 years of age. Approximately 0.0% were diagnosed under age 20; 1.8% between 20 and 34; and 9.9% between 35 and 44.  See http://seer.cancer.gov/statfacts/html/breast.html#incidence-mortality

Does this article show a need for breast cancer screening in women aged 25 to 39?  No.  Current screening methods are not effective in young women.  Recent research calls into question the benefits of screening mammography for women under 50.  Just last December, a paper by one of the JAMA article authors and Dr. Gilbert Welch showed the harms that mammography screening has caused over the last three decades.  See http://www.youngsurvival.org/blog/?p=2046.

Last, but certainly not least, this study shows the need for young women to be informed about science, statistics and critical review of study reports and media summaries of those reports.  If you are interested in learning more, we encourage you to consider attending Project LEAD, a training course offered by the National Breast Cancer Coalition, which is now accepting applications for its annual Institute.  http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/

Regardless of the exact number of young women diagnosed with metastatic disease at initial diagnosis, it is too many.  There is an urgent need to study metastatic disease, especially in young women who are generally understudied and excluded from metastatic clinical trials. YSC has always emphasized the importance of researching breast cancer in young women and this article supports that need.

A comprehensive summary of the article, explanation and commentary can be found in YSC’s detailed statement.

YSC would like to thank Joy Simha for her input and assistance with developing this statement.

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Categories: Guest Bloggers

From Drifting to Found: YSC Gave Me a Community

Feb 20 avatar by Pam, YSC Member and Patient Advocate

PrintI thought it would be easy to write a blog post about what the YSC community boards have meant to me in the five years since my breast cancer diagnosis. However, I was wrong. The feelings this topic raises are very strong for me and are hard to corral into words.

Nonetheless—here goes. Five years ago last month, I was diagnosed with Stage 2 breast cancer. I was a freelance writer smack in the middle of many projects; and I was trying to plan a family. In addition, I was a vegetarian and a devoted yoga-doer. I’d rejected the pill for health reasons, I drank in true moderation, and I’d smoked maybe ¾ of a cigarette in my life. Didn’t that count for anything?

I found local resources—my hospital’s breast cancer support group, for example. And these resources were great, but, as is common, I found that many of my co-survivors were a good deal older than I was and at a different stage of life. They had grandkids; they collected social security. They didn’t have to worry about the income they’d lose during treatment or to have anxiety attacks about the prospect of losing health insurance. Some, even as they faced chemo and surgery and radiation as I did, flat-out told me they felt bad for me. I appreciated their concern, but this didn’t feel especially helpful.

Then, one night, I discovered YSC’s web site and its community bulletin boards. And there, finally, were photos of women who looked like me. And I could see their “stats”—where they’d started out, diagnostically, and where they were now. Did someone have my pathology? My stage of disease? How was life going for her?

I was grateful to see that people were finding humor, and lots of it, even in difficulty. There were stories of wigs gone bad, dates during chemo, clueless coworkers saying any number of annoying things. One girl, diagnosed at Stage 3, asked in her stats, “Why do I always have to ‘go big’?” It was funny. My shoulders unclenched. I would not be pitied here, and I would not be alone.

I found, through the YSC boards, a group of women who’d be starting chemo when I would—March 2008. We christened ourselves the March Moxies. I can’t overstate how much it helped me, as I headed into treatment, to know they were doing the same. Each day I’d report to them on my side effects, my hair (and then lack of), my hopes and fears, and, in fact, the clueless things my own coworkers ended up saying; and I’d eagerly read their reports of the same. I loved and needed them so much that, when my treatments continued on a bit longer than that of other Moxies, I attached myself to another cyber-group of women, the Mayflowers, who were still in treatment. What we all experienced together created a permanent bond.

Five years have felt like five minutes and also, in some ways, like a lifetime. I’ve gained  invaluable advice about treatments, options, side effects, and recovery, as well as an amazing community and very dear friends. I’ve also cried again and again over beloved YSC sisters lost far too soon. The loss doesn’t get easier. I never get used to it; nor would I want to. But I carry these friends with me always, and I’m grateful to feel them in my heart.

Knock every piece of wood, my own current health status is good, and I hope that my “stats” will give hope to others. Not all the life issues that concerned me five years ago have been resolved, but I’m here to continue to work on them, to reach for my goals, and  to experience what life brings. I’m happy to be available for newly diagnosed women, as others were there for me when I was diagnosed. I’m here to say you too can do this, and you will not be alone.

I love the newly revamped boards. They’re streamlined and easy to use, but they offer some great new features. One is the Member Map, which helps you find YSCers in your area. There’s nothing like the power of young survivors getting together, one-on-one or in groups, to comfort, laugh, cry, celebrate, or simply share a meal. I spend time with YSCers in my hometown and also, if possible, everywhere I travel. If you’re in New York City or coming here, let me know—I would absolutely love to see you.

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Categories: Guest Bloggers

YSC’s Research Think Tank Remembers Randi Rosenberg (1965-2010)

Feb 14 avatar by Joy Simha, YSC Co-Founder

Diagnosed with breast cancer at the age of 32 in 1998, Randi Rosenberg was one of the original founding members of Young Survival Coalition (YSC) and its third board president. Her drive to enact change fueled her talented way of engaging the busiest people on the planet to get involved in solving the problem of early onset breast cancer.

Randi Rosenberg (1965-2010)

Randi Rosenberg (1965-2010)

Randi was incredibly smart, funny, inspiring and inquisitive. Although petite, her larger-than-life contagious, collaborative energy filled up a room and motivated others to accomplish common goals. She was a woman who could change the world … and she did.

It was Randi’s view that unlocking the answer to early onset breast cancer was the key to curing most women of breast cancer and that in order to force a national agenda, young survivors of all cancers needed to band together. Her work with the Steering Committee of LIVESTRONG’s Young Adult Alliance (now Critical Mass) in 2006 resulted in Closing The Gap: A Strategic Plan, one of the strongest and most powerful agendas in history to address young adult oncology issues.

She believed that the support young women received at YSC would sustain them in good times and bad.

Randi was diagnosed with bone metastasis in 2006. She died of her disease on February 15, 2010. She leaves behind her partner, Matt Purdue, their beautiful daughter, Alexandra Marais, brothers Lee and Scott, and her mother, Roberta (Bobbi) Rosenberg.

We will be forever grateful for the passion, dedication and joie de vivre that Randi gave to YSC. She taught us that significant change can happen when a few people unite to make a difference.

And so it is that we held a Research Think Tank last week in Randi Rosenberg’s honor – just one week shy of the three-year anniversary of her passing, as happenstance would have it. We gathered researchers, clinicians and advocates who care about increasing the quality and quantity of life for young women affected by breast cancer together in one room so we could collaborate at a level that Randi would have applauded. She truly believed that if we could unlock the key to why young women got breast cancer then we could perhaps better understand it in all women. The think tank proved that Randi lives on in so many of our hearts as we work together to try to improve young women’s lives.

We will honor Randi’s legacy and carry her spirit with us as we continue to ask the key questions that drive forward advances in research pertaining to early onset breast cancer.

 

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Categories: Guest Bloggers