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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I 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.

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 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.

I was very excited when I got the email last July from Kat Werner inviting me to be part of a YSC project called the Research Think Tank.  The email explained that in 2001 YSC had convened a “Medical Research Symposium on Young Women and Breast Cancer,” which resulted in a white paper that set an agenda for the future direction of research in young women.  Now YSC was re-evaluating the state of the research, in order to identify what “holes” still existed in breast cancer research pertaining to young women.  Kat invited me to be a part of the Think Tank, and I jumped at the chance.

You see, despite my degree in English and my almost total avoidance of science courses in college, I have become a medical science geek. I visit websites that report new medical developments.  I have attended the San Antonio Breast Cancer Symposium for the past two years, and I have reviewed grant proposals for the Department of Defense Breast Cancer Research Program.  So this self-described science geek was thrilled to be invited to be a part of the Research Think Tank that would be a collaboration between advocates and researchers to set a revised agenda for young women with breast cancer.

In preparation for the conference itself, Think Tank advocates were divided into work groups, and each work group was assigned a broad area on which to focus.  I was assigned to the Treatment work group.  This group focused its efforts on analyzing research concerning surgery, chemotherapy, radiation, and endocrine therapy specifically in young women and then identifying important issues which had not yet been studied.  What struck my group most as we were exploring the existing research is the total lack of a uniform definition of what constitutes a “young woman with breast cancer.”  Many studies appear to use menopausal status as a surrogate for age, often with no indication that anyone has confirmed the patient’s actual menopausal status.  More significantly, of the studies that have classified women by age, there are studies defining “young women” as those under age 35, those under age 40, those under age 45, and—somewhat astoundingly—those under age 65.  Without a common definition of who is a “young woman with breast cancer,” how will researchers ever be able to reach meaningful conclusions on the appropriate treatment for these women?

Which leads me back to why the upcoming YSC Research Think Tank is so important.  A study presented at last year’s San Antonio Breast Cancer Symposium appeared to show that breast cancer in women diagnosed at age 40 or younger responds differently to chemotherapy—almost as if it is a different disease.  Yet this disease is not being systematically studied in this group of women. This is a perfect example as to why we need to focus researchers to help make a measurable impact in the lives of young women affected by breast cancer.

While I have been looking forward to the Think Tank meeting since last July, my excitement has been somewhat dampened by the tears I’ve shed since Kat’s sudden death last September.  Kat had a remarkable talent for cutting through the scientific doublespeak and getting to the heart of the issue or the hole in the science.  She respected the researchers, but she also commanded their respect due to her depth of scientific knowledge and her ability to clearly articulate the survivors’ perspective.  She was never intimidated by the researchers she met because she believed we could only truly find a cure if advocates and scientists worked together.  While I know that others had a part in initiating this Think Tank, it truly reflects Kat’s heart and soul.  It hurts to know she won’t be physically present at the conference she planned to lead, but I hope that I, along with all the advocates and scientists, can channel her spirit as we work to outline the necessary research strategy it will take to improve the lives of young women affected by breast cancer.